But I'm home now, and I know I haven't posted anything since September. My excuses:
1) After being home for about six days, my blood levels got screwed up and I had to be re-admitted for another week. This was especially disappointing since my aunt who I haven't spent time with since I was a toddler was visiting. It really sunk in that having a TAH - or even a real, healthy, functioning heart - is no Get Out Of Jail Free card. There will still be hospitalizations. It's almost happened a few more times since then. It's sobering to finally face the reality that the rest of your life will be filled with scares like this, no matter what. The last thing I felt like doing was writing about it.
2) We were absolutely drowned in support, love, affection, and well-wishes in the weeks leading up to the surgery and during my hospital stay. That part was awesome. But inevitably, and by my own doing, it began to feel like everyone knew everything about every detail of what was happening. I think this is comforting for some people. By the time I got home, I didn't want anyone to know anything. I craved privacy. I still do. I spent many years in the public eye - though only locally - due to my ministerial affiliations, music endeavors, etc. in the Little Rock area. As a result, I carry a strong aversion to being recognized by strangers in public, and I get a little twitchy when all my crap is "out there" for people to see/read about. There aren't many times that I'm at Hershey Med now that someone I don't know, asks if I'm Dave, "The TAH guy." I wanted to wait to post anything until I was ready. I hope that makes sense.
Either way, I realized last week that the primary purpose for this blog is to keep family and friends informed, but it has also become a source of information for people in my situation, or who may walk this road in the future. With that in mind, I intend to post a few times this week and discuss various aspects of life with a TAH, some personal, some informative. I'll begin with the personal.
Let's start with how I'm doing, since that's the big question everyone asks.
Physiologically? I feel great. I don't feel sick every day, I'm rarely nauseous. My appetite has returned, as well as my passion for the things I love - recording music, writing, playing games with my kids, cooking...and I actually have the energy to do them. On the other hand, the TAH is extremely restrictive in terms of my physical activity. I'll get into that in the next post. I still have tubes stitched into my abdomen. I wear an abdominal binder 24/7 to protect them. I have a Pic line protruding from my right arm that has to be watched with strict scrutiny to avoid infection. So while I feel great, I'm uncomfortable with these intrusions to my body. They don't keep me up at night, but they can be quite a distraction at times.
2) We were absolutely drowned in support, love, affection, and well-wishes in the weeks leading up to the surgery and during my hospital stay. That part was awesome. But inevitably, and by my own doing, it began to feel like everyone knew everything about every detail of what was happening. I think this is comforting for some people. By the time I got home, I didn't want anyone to know anything. I craved privacy. I still do. I spent many years in the public eye - though only locally - due to my ministerial affiliations, music endeavors, etc. in the Little Rock area. As a result, I carry a strong aversion to being recognized by strangers in public, and I get a little twitchy when all my crap is "out there" for people to see/read about. There aren't many times that I'm at Hershey Med now that someone I don't know, asks if I'm Dave, "The TAH guy." I wanted to wait to post anything until I was ready. I hope that makes sense.
Either way, I realized last week that the primary purpose for this blog is to keep family and friends informed, but it has also become a source of information for people in my situation, or who may walk this road in the future. With that in mind, I intend to post a few times this week and discuss various aspects of life with a TAH, some personal, some informative. I'll begin with the personal.
Let's start with how I'm doing, since that's the big question everyone asks.
Physiologically? I feel great. I don't feel sick every day, I'm rarely nauseous. My appetite has returned, as well as my passion for the things I love - recording music, writing, playing games with my kids, cooking...and I actually have the energy to do them. On the other hand, the TAH is extremely restrictive in terms of my physical activity. I'll get into that in the next post. I still have tubes stitched into my abdomen. I wear an abdominal binder 24/7 to protect them. I have a Pic line protruding from my right arm that has to be watched with strict scrutiny to avoid infection. So while I feel great, I'm uncomfortable with these intrusions to my body. They don't keep me up at night, but they can be quite a distraction at times.
Emotionally? It varies. Most days I go about my business. Some days I think too much about the fact that my life is dependent on this machine I carry around, and that it could simply stop at any moment for a number of reasons. It's hard not to be on edge, at least sub-consciously while living in that state. Even if I do everything right, there is still the off chance that the machine could fault, causing whoever is with me to have to change me over to the backup driver - which means stopping my heart for a few seconds. It's dangerous, it's scary. As a result of this possibility, I have to have someone with me 24/7 who is trained on how all the equipment operates. There are a handful of friends, and of course Christie and the boys, who went through the week-long training classes while I was still in the hospital. We review all of this regularly.
But the 24/7 thing is the biggest challenge. Christie works 12 hour shifts, 3-4 nights a week. That leaves me here with only the boys, unless one of these other trained friends spends the night. While we're unspeakably grateful that these folks are willing to give up a night or two a week to sleep over here, it also begins to wear on us, them, and our friendship. Imagine having company - even your best friends - at your house 3-4 nights a week (better yet, imagine spending 3-4 nights with *me* - that's a fate I wouldn't wish on anyone). Being there in the morning when you wake up. After a time, no matter how considerate they are (and they are all very considerate for the most part), you begin to crave privacy and solitude. Not to mention, the three of us boys are used to having "us" time while mom works nights - we've had that for nearly 8 years now. It's our time to watch Star Wars cartoons, play D&D, order pizza, or do whatever we want. Dressed however we want. For as late as we want. That's all changed, and the adjustment is harder than I thought it would be. The alternative is to simply leave the boys in charge of me while Christie's at work, but this presents another set of issues: What happens if the worst happens? What happens if the machine malfunctions and I die? Is it fair to put the boys in a situation where they have to live with that for the rest of their lives?
The obvious answer is - no, it's not fair. While I have zero reservations about them doing the actual deed of changing me over to the backup driver, or handling emergencies; they've done stuff like this for years, and Richard, particularly, is the most cool-headed person I've ever seen in a crisis situation - I'd have been in cardiac-arrest several times over the years had it not been for his methodical assessment of the situation, and his ability to take control and come up with a plan on his own. Kids should never be left in these situations, but someone has to work - Christie can't be here 24/7 and they are - it's been that way for years now. I trust them - in fact, in an emergency, I would rather have Rich and Brennan handle the equipment change over than any of the other adults that were trained. Because they live with the machine day in and out. They know what the alarms mean and what the batteries do, and they understand the reasons behind the systematic process of starting and stopping the machines, as well as my heart.
The most gut-wrenching conversation of my life took place about a month ago as we considered how to handle this situation. I may be on the TAH for a year or two. My physical well-being is the main consideration, but over that length of time, we also have to consider our family life. We have to consider how all of this together affects us - Christie, myself, and the boys. They have a lot of stake in this, and a lot of responsibility, whether they want it or not. Between my sobbing and apologizing, we talked about all of it. The boys ultimately insisted that regardless of what *might* happen should things go wrong, they would rather be the ones responsible for me in an emergency. They also insisted that even if someone else was here - they themselves would feel responsible if something went wrong from another person switching the machines. I have witnessed this first hand - even the adults that stay here take their cues from Rich. At the end of the day, he is the one everyone looks to if Christie isn't here. This isn't fair to him, and my mind reels. How did me having a heart disease ultimately lead to my 14 year old son holding his own father's life in his hands? If someone had told me it would come to this in 1998, at the beginning of this nightmare, I would have taken drastic measures to ensure that scenario never came to be.
Rich understands all of this. He acknowledges that it is not fair. But he also repeatedly tells me, "It doesn't matter if it's fair. This is how it is, and we have to deal with what is, not what should be." As a parent and adult, I have felt so lost in dealing with this - so has Christie. Do we continue sacrificing our privacy and the memories we make, and our (possibly short) time together for the sake of my physical safety? Or do we take the chance that we're overburdening our boys with a responsibility they should never have to shoulder for the sake of having as normal a life as possible in the midst of this? They insist that neither choice is attractive, but the latter is preferable. We've agonized over this since November and have decided to compromise - our friends will take turns being "on call" on nights when Christie works, and I'll be here with the boys. All of us openly acknowledge that if anything happens, it will happen before anyone can realistically get here - including the paramedics. We'e decided to make the most of the time we have, rather than living in what feels like chaos and a disruption of our whole life based on the off chance that a machine fails. The outcome is likely to be the same no matter who is here. It took weeks of tear-fraught conversations between us all (and some of these friends) to accept that reality. Rich and Brennan seem to have understood it from the very first week I came home.
So emotionally, psychologically, I don't like the situation. We're trying to do the best we can, and there's no one to ask advice from. The other TAH patients are empty-nesters, or there's Perry, who has no kids. Talk about uncharted waters. I worry we're sailing to that place on the map that says, "Here, There Be Monsters," but I don't know what else to do. My gut tells me to listen to my kids. Being on our own, travelling for several years, we encountered many situations that seemed to have no solution. The boy's input has been invaluable so many times, and we've learned to approach these situations as a team of 4. Yes, Christie and I are older and have more life experience, but we also have more baggage. The boys (as all children) seem to have an innate objectivity that escapes us often. It was Brennan who dissected the options of my post TAH hospital stay and brought clarity to the whole thing by offering a perspective that even the nurses present hadn't considered. His observations turned out to be dead on, logical, and the most objective. Rich has tempered our impulsiveness so many times I've lost count. It has saved us from financial problems, relationship failures, and pulled Christie and I back from the brink of stress-inspired knee-jerk reactions repeatedly. We've all learned to trust each other, and it's impossible to think about making such decisions without their input weighing heavily. As captain Mal Reynolds says, "We have done the impossible, and that makes us mighty." It's become our motto.
I can see the heaviness of all this, weighing on them at times. I feel like they don't often just get to be kids. Anywhere we go, they're both listening for alarms. Rich carts my backup equipment around without complaint - but I'd love for him to be able to leave the house without doing an inventory to make sure dad doesn't die while we're out. He knows - a forgotten battery, or adapter, or even a lost filter guard tool can mean hospitalization, or even death. I'd rather him be worried about having the right Nerf gun. I'd rather Brennan be more concerned with carrying his Pokemon cards than with checking battery levels to assess whether I'll need to be plugged in wherever we're going. I can tell it wears on them, but I've never heard a single word of complaint. The constant battery switches, the moving of power adapters between rooms and floors, the filter changes, the constant re-location of the backup equipment up and down the stairs, in and out of the van, up flights of stairs...they never moan or gripe about it. They've accepted the reality that this is the way it is, even though it's not right, or fair. Given that, how can I complain about my situation?
Physically? I sleep much better now. I don't tire out in the middle of the day, or have to sit down every 10 minutes when we're out somewhere. The freedom of that is incredible. Physically, no one should be worried about me. But I worry about Christie a lot. She's been trying to find a job where she can work at home to take this burden from the boys, but the pay is usually bad, and the job security lackluster. This makes her feel guilty, but she can only do so much, and someone has to work.
The worst thing for her are the trips to the hospital. I hate them too - they interrupt my days and weeks and make it really tough to commit to anything. Mon, Wed, Fri without fail, every week; PT-INR checks, lab-draws, dressing changes, more PT-INR checks...add to that the regular doctor appointments with the intensivest, cardiologist, neurologist, etc. We only live a half hour from the hospital, but think about the way this works; my appointments are non-negotiable. So is her work schedule most of the time. Generally, she goes to work at 7 pm on Sunday, gets off work at 7 am Monday - then I have an appointment at 11:30 pm that day. It's often difficult to get a ride to the hospital in the middle of the day, and I can't drive myself - I can't even sit in the front seat because of the air bag. So Christie typically clocks out after 13 hours on her feet, drives home, showers (because she's likely been puked, peed, or pooped on - or exposed to all manner of disease and bacteria that is dangerous to me) - it's now about 9:30. We leave for the hospital in an hour. Take a nap? Stay awake? Usually the latter. We get back home around 1:30-2 pm, provided the doctor or the clinicians aren't running behind. She's in bed by 2:30 pm, then up again at 5:30 pm to go back to work at 7pm. Sometimes this happens for days in a row if there's an extra appointment on a Tuesday or Thursday. Or the boys have something on those days they can't get a ride to. Or that a parent needs to attend. And it's been like this for four months now. 3 hours of sleep most nights (days in her case) would drive the best of us to insanity. I honestly don't know how she's still doing it. Friends help out as much as they can, but they can't be at our beck and call all the time. Sometimes we get lucky and score an appointment for 8:30am, or she's off the night before, but that's not typical. It seems sometimes that it would be better for me to be admitted to the hospital, but there's no viable reason for insurance to cover a full admission.
Add to that the fact that she signed a contract saying she would begin work on her BSN within two years of her hire date. When we moved here to PA, we were so desperate to transfer my transplant list status, we would have signed nearly anything. We were in a rush to get a house and a job, and we both figured she'd be able to start school pretty soon. We didn't know I'd be in the hospital for 2 weeks at a time every 6 weeks for 2 years, or that I'd end up on a TAH, completely dependent on her, and her responsible for pretty much every household duty that I'd taken on for years. The two years was up last summer and despite appeals to the very top of Penn State's Nurse Managers, my device coordinator, and letters sent by friend and co-workers, she's required to start school by February or she will be terminated. With us living paycheck to paycheck, and tuition not being reimbursed until the class is completed, we can't pay for it. She doesn't even have time to take a single class to begin with - and if she tried, she would most certainly fail or have to drop out, with consequences to her transcript. In the midst of this, she's looking for a new job, which will postpone the school deadline and possibly stabilize her schedule. She's obviously stressed out about the whole thing. If she's terminated - no insurance, bankruptcy, possibly losing our house. I worry about her physically and emotionally. And the kids, of course, feel this tension and uncertainty, though we try to put on the bravest face possible.
The obvious answer is - no, it's not fair. While I have zero reservations about them doing the actual deed of changing me over to the backup driver, or handling emergencies; they've done stuff like this for years, and Richard, particularly, is the most cool-headed person I've ever seen in a crisis situation - I'd have been in cardiac-arrest several times over the years had it not been for his methodical assessment of the situation, and his ability to take control and come up with a plan on his own. Kids should never be left in these situations, but someone has to work - Christie can't be here 24/7 and they are - it's been that way for years now. I trust them - in fact, in an emergency, I would rather have Rich and Brennan handle the equipment change over than any of the other adults that were trained. Because they live with the machine day in and out. They know what the alarms mean and what the batteries do, and they understand the reasons behind the systematic process of starting and stopping the machines, as well as my heart.
The most gut-wrenching conversation of my life took place about a month ago as we considered how to handle this situation. I may be on the TAH for a year or two. My physical well-being is the main consideration, but over that length of time, we also have to consider our family life. We have to consider how all of this together affects us - Christie, myself, and the boys. They have a lot of stake in this, and a lot of responsibility, whether they want it or not. Between my sobbing and apologizing, we talked about all of it. The boys ultimately insisted that regardless of what *might* happen should things go wrong, they would rather be the ones responsible for me in an emergency. They also insisted that even if someone else was here - they themselves would feel responsible if something went wrong from another person switching the machines. I have witnessed this first hand - even the adults that stay here take their cues from Rich. At the end of the day, he is the one everyone looks to if Christie isn't here. This isn't fair to him, and my mind reels. How did me having a heart disease ultimately lead to my 14 year old son holding his own father's life in his hands? If someone had told me it would come to this in 1998, at the beginning of this nightmare, I would have taken drastic measures to ensure that scenario never came to be.
Rich understands all of this. He acknowledges that it is not fair. But he also repeatedly tells me, "It doesn't matter if it's fair. This is how it is, and we have to deal with what is, not what should be." As a parent and adult, I have felt so lost in dealing with this - so has Christie. Do we continue sacrificing our privacy and the memories we make, and our (possibly short) time together for the sake of my physical safety? Or do we take the chance that we're overburdening our boys with a responsibility they should never have to shoulder for the sake of having as normal a life as possible in the midst of this? They insist that neither choice is attractive, but the latter is preferable. We've agonized over this since November and have decided to compromise - our friends will take turns being "on call" on nights when Christie works, and I'll be here with the boys. All of us openly acknowledge that if anything happens, it will happen before anyone can realistically get here - including the paramedics. We'e decided to make the most of the time we have, rather than living in what feels like chaos and a disruption of our whole life based on the off chance that a machine fails. The outcome is likely to be the same no matter who is here. It took weeks of tear-fraught conversations between us all (and some of these friends) to accept that reality. Rich and Brennan seem to have understood it from the very first week I came home.
So emotionally, psychologically, I don't like the situation. We're trying to do the best we can, and there's no one to ask advice from. The other TAH patients are empty-nesters, or there's Perry, who has no kids. Talk about uncharted waters. I worry we're sailing to that place on the map that says, "Here, There Be Monsters," but I don't know what else to do. My gut tells me to listen to my kids. Being on our own, travelling for several years, we encountered many situations that seemed to have no solution. The boy's input has been invaluable so many times, and we've learned to approach these situations as a team of 4. Yes, Christie and I are older and have more life experience, but we also have more baggage. The boys (as all children) seem to have an innate objectivity that escapes us often. It was Brennan who dissected the options of my post TAH hospital stay and brought clarity to the whole thing by offering a perspective that even the nurses present hadn't considered. His observations turned out to be dead on, logical, and the most objective. Rich has tempered our impulsiveness so many times I've lost count. It has saved us from financial problems, relationship failures, and pulled Christie and I back from the brink of stress-inspired knee-jerk reactions repeatedly. We've all learned to trust each other, and it's impossible to think about making such decisions without their input weighing heavily. As captain Mal Reynolds says, "We have done the impossible, and that makes us mighty." It's become our motto.
I can see the heaviness of all this, weighing on them at times. I feel like they don't often just get to be kids. Anywhere we go, they're both listening for alarms. Rich carts my backup equipment around without complaint - but I'd love for him to be able to leave the house without doing an inventory to make sure dad doesn't die while we're out. He knows - a forgotten battery, or adapter, or even a lost filter guard tool can mean hospitalization, or even death. I'd rather him be worried about having the right Nerf gun. I'd rather Brennan be more concerned with carrying his Pokemon cards than with checking battery levels to assess whether I'll need to be plugged in wherever we're going. I can tell it wears on them, but I've never heard a single word of complaint. The constant battery switches, the moving of power adapters between rooms and floors, the filter changes, the constant re-location of the backup equipment up and down the stairs, in and out of the van, up flights of stairs...they never moan or gripe about it. They've accepted the reality that this is the way it is, even though it's not right, or fair. Given that, how can I complain about my situation?
Physically? I sleep much better now. I don't tire out in the middle of the day, or have to sit down every 10 minutes when we're out somewhere. The freedom of that is incredible. Physically, no one should be worried about me. But I worry about Christie a lot. She's been trying to find a job where she can work at home to take this burden from the boys, but the pay is usually bad, and the job security lackluster. This makes her feel guilty, but she can only do so much, and someone has to work.
The worst thing for her are the trips to the hospital. I hate them too - they interrupt my days and weeks and make it really tough to commit to anything. Mon, Wed, Fri without fail, every week; PT-INR checks, lab-draws, dressing changes, more PT-INR checks...add to that the regular doctor appointments with the intensivest, cardiologist, neurologist, etc. We only live a half hour from the hospital, but think about the way this works; my appointments are non-negotiable. So is her work schedule most of the time. Generally, she goes to work at 7 pm on Sunday, gets off work at 7 am Monday - then I have an appointment at 11:30 pm that day. It's often difficult to get a ride to the hospital in the middle of the day, and I can't drive myself - I can't even sit in the front seat because of the air bag. So Christie typically clocks out after 13 hours on her feet, drives home, showers (because she's likely been puked, peed, or pooped on - or exposed to all manner of disease and bacteria that is dangerous to me) - it's now about 9:30. We leave for the hospital in an hour. Take a nap? Stay awake? Usually the latter. We get back home around 1:30-2 pm, provided the doctor or the clinicians aren't running behind. She's in bed by 2:30 pm, then up again at 5:30 pm to go back to work at 7pm. Sometimes this happens for days in a row if there's an extra appointment on a Tuesday or Thursday. Or the boys have something on those days they can't get a ride to. Or that a parent needs to attend. And it's been like this for four months now. 3 hours of sleep most nights (days in her case) would drive the best of us to insanity. I honestly don't know how she's still doing it. Friends help out as much as they can, but they can't be at our beck and call all the time. Sometimes we get lucky and score an appointment for 8:30am, or she's off the night before, but that's not typical. It seems sometimes that it would be better for me to be admitted to the hospital, but there's no viable reason for insurance to cover a full admission.
Add to that the fact that she signed a contract saying she would begin work on her BSN within two years of her hire date. When we moved here to PA, we were so desperate to transfer my transplant list status, we would have signed nearly anything. We were in a rush to get a house and a job, and we both figured she'd be able to start school pretty soon. We didn't know I'd be in the hospital for 2 weeks at a time every 6 weeks for 2 years, or that I'd end up on a TAH, completely dependent on her, and her responsible for pretty much every household duty that I'd taken on for years. The two years was up last summer and despite appeals to the very top of Penn State's Nurse Managers, my device coordinator, and letters sent by friend and co-workers, she's required to start school by February or she will be terminated. With us living paycheck to paycheck, and tuition not being reimbursed until the class is completed, we can't pay for it. She doesn't even have time to take a single class to begin with - and if she tried, she would most certainly fail or have to drop out, with consequences to her transcript. In the midst of this, she's looking for a new job, which will postpone the school deadline and possibly stabilize her schedule. She's obviously stressed out about the whole thing. If she's terminated - no insurance, bankruptcy, possibly losing our house. I worry about her physically and emotionally. And the kids, of course, feel this tension and uncertainty, though we try to put on the bravest face possible.
So I'll say again for the 100th time on this blog - I don't share these things to elicit pity. Some of my readers will be implanted with TAHs in the future, some are already on that road. These are some of the things to expect. You will feel better, but it's far from a cure-all. Your life, and your family's life, will be dominated by hospital appointments. Your time will not be your own- there will now be people in your life at all times, whether you want them there or not. You will lose all independence outside of your home. Solitude is non-existent. Your spouse/life-partner will be taxed to their limit, and those around you will not understand your tension, your stress, your absolute exhaustion. They will be angry and hostile - because this was supposed to make everything better, right? You start to suspect that at the root, they're simply angry because you're still sick. You will learn to ignore all of it and focus on your family, on staying as healthy as possible (because, lucky you, you get to do this whole thing again, but this time, at a higher risk level because of the TAH and subsequent transfusion anti-bodies in your system). You learn to cherish the day and disregard the people who think they get it but clearly don't. They're not bad, they're just ignorant. Most of all, you learn what is important and what's not - you let go of things, while simultaneously holding on tightly to the scars you have earned while enduring this fire. These are scars you hold in common with those closest to you who have held your hand through the fire. And you keep living.
Conclusion - I'm happy to be alive. Any day above ground is a good day. I wish I could do more. I wish my family wasn't burdened with my care to such an extent. I'm anxious to end this season of life and get a transplant, in hopes of truly being well and independent again. I'm doing well, but as always, there are clouds looming. I don't think they ever abate in situations like these. You just have to look for the sun behind the clouds and buy the best umbrella you can afford.
Hi Dave,
ReplyDeleteFirst, thanks for coming to see It's A Wonderful Life. We (the cast) appreciated you giving us the chance to rehearse in front of an audience.
Now to get to my main concern: how can you say the Rutles toured and recorded in the 60s? Eric Idle and Neil Innes did a comedy album in the early or mid 70s called Rutland Times. (I think that's the name. I have a copy somewhere.) That album had two future Rutles songs on it, with one actually credited to the Rutles. The mockumentary was first shown on NBC in 1978. I don't think they existed in any way prior to that.
Take care,
Jack Ferry
P.S. You wrote a long, heartfelt personal blog, and my comment just has to do with the Rutles. Typical internet.
Oh, how my memory slips! You are correct, Sir. I'm still working on my Ruttles trivia now that I've somewhat conquered my Beatles trivia. The play was excellent; we felt priveledged to get a private showing. Hopefully in the near future I'll be there with you guys working stage crew or lights and sound.
DeleteDave, there are no words...except...the Johnson family rocks and wimps need not apply. Thank you for giving us just a glimpse of what is going on. I know it was just the tip of the proverbial iceberg. I love you all.
ReplyDeleteDave, thank you for sharing all this on your blog. I think of you guys often! The way you write about your experiences, and about Rich, Brennan and Christie is so touching...
ReplyDelete