For You Are The Wind Beneath My Wings
Bette Midler (I think?)
This week I turn 52 years of age and my LVAD is 13 months old. As I mentioned or pondered in my last entry, how does one measure time in our lives. I put it out that a day is about 129,600 beats a day. It becomes even more overwhelming when I think about it, a month (93,312,000), or a year 1,119,744,000). Wow, almost 1.2 billion beats for each and every year I have my LVAD. And yet life still comes to me a beat at a time. No faster, no slower; just one beat at a time. But, then it does for everybody – right? I just have a little electric “engine that could” making sure my beat goes on.
So enough the waxing metaphorically, I wouldn’t want anybody thinking that I am no grounded soundly in reality.
I am certainly am not of the age to be considered young, and I don’t think of myself as old, just somewhere in between. I will admit there I times I feel old, very old, but I don’t really know what old is for me now that I have an LVAD that handles 80+% of my hearts workload. It is not an artificial heart, but it is the closest thing available. I sometimes describe it as one to greatly simply defining it to folks when asked. It really is like I am out there on the medical frontier.
I know another patient here in LA who has had his for nearly 18 months. Replacement for him will be in the near future. But reason for having his LVAD is different than my own. He has cancer, and it is his second time around. He really is a fighter and a survivor as his battle is greater than mine and he just keeps marching on, each day a gift, each day, and one more than yesterday. As we both have said, every day is different; handling it is unique; day at a time, minute at a time, and yes sometimes a moment at a time.
In talking with him, we do have very similar philosophies and manage from somewhere deep within as well as all the outside support do make it for another day, another week, who knows how long. He just takes what life offers. I try to focus and do that, but it is not always easy.
Gee I do like metaphors and quoting things I read or hear that inspire me. I will admit I am watching IDOL as I am writing this and there are so many well written songs about living in the “moment”. I just listened to a performance by Queen Emily singing “One Moment in Time” ( made popular by Whitney Houston). It makes me think about just how many more moments LVAD has given me. I was able to celebrate my partner’s (Don) 60th birthday and do not se a problem celebrating his 61st and hopefully quite a few to follow. Don and I celebrated our relationship of 16 years and plan to marry this fall and I have now celebrated two birthdays myself.
I probably ponder too much issue of about life and time. “It is better to read a little and ponder a lot than to read a lot and ponder a little” (Dennis Parson Murkitt). I do spend a lot of time reading and listening, so maybe I don’t ponder so much. The LVAD has been and is a blessing, but life’s moments should be treasured even more. One of my favorites is when I wake in the night to discover my lover’s arm holding me or when he wakes me in the morning with a fresh cup of coffee. Those moments are always worth every day.
So as I celebrate my birthday, there were moments. A friend calling out of the blue, discovering a box of chocolates at my front door; and going to lunch with a good friend with no rush, no hurry, actually somewhat spontaneous. I guess I wish there was a little more spontaneity in my life, but I do have to preplan to a certain extent. Today I forgot my emergency/battery bag. I wasn’t too worried as I put fresh batteries in prior to going out for lunch…..but what if? I did make it without incident, thank God. It was foolish not to return as soon as I discovered I was without them, but I felt relatively secure I would make it home in plenty of time after lunch, after all the batteries usually last well over 4 hours…
Very fortunate indeed as I did make it home without event. Regardless, another moment was created. So regardless of how one measures time in a life, by moment, my heartbeat, or by minute; it is always one more than we had.
Namasté
Thursday, September 25, 2008
Tuesday, September 23, 2008
One Hundred Twenty Nine Thousand Six LVAD Beats
One Hundred Twenty Nine Thousand Six LVAD Beats
Is how I measure a DAY!
Thump, thump, wisp, wisp; Thump, thump, wisp, wisp; Thump, thump, wisp,wisp….. My LVAD just keeps pumping away; somewhere in the neighborhood of One Hundred Twenty Nine Thousand Six Hundred Minutes – EVERYDAY! It is definitely audible in a quiet room and something I can always feel working, almost regardless of the activity. Its beat is pretty strong, think of how you feel your heart - when you have been scared shitless, or run to catch a plane. I am not complaining, just a frustration. I saw the theatrical product of Dolly Pardon’s “9 to 5”. The thought crossed my mind of what if my LVAD only needed to run “9 to 5”. Of course that would only be 43,200 beats. Unfortunately it must work relentlessly 24 hours per day. Thump, thump, wisp, wisp; Thump, thump, wisp, wisp; Thump, thump, wisp, wisp…… on it goes.
Today was a beautiful day. But because of my LVAD, I am not only still here; but I had a fairly typical Sunday as compared to before all this heart failure business. We rose early so we could watch Meet The Press. Actually this is something I never used to do as I never really had or made the time to keep up with politics. So I can say LVAD has definitely allowed me to do things had wished I could do.
Then we went to our little Farmers Market in Studio City. It is just around the corner so to speak. Afterwards, it is off the Trader Joe’s and other errands. Got home and put a big o’ kettle of red beans and rice on the stove. (Oh I miss going to New Orleans) I don’t really know how to make a little bit of anything as it never is quite right until the kettle is full. I guess it is a carryover from my childhood where dinner was “supper” and having neighbors over to eat was not un common (or vica versa) just an opportunity to share our table and our lives. (Of course we had a big ole freezer for leftovers also.)
Anyway, from the kitchen I proceeded to work in my patio garden. We live in a condo, so the patio is the only garden I have – BUT IT HAS BECOME A JUNGLE OUT THERE. I start cuttings for friends, dividing other plants, deadheading flowers to promote more flowers. I even have 8 hummingbird feeders. A friend got me started by giving me a very nice blown glass feeder for my birthday a couple of years ago. Now I just keep adding to the collection. The funny thing is the hummingbirds seem to like the cheep tacky plastic feeders the best! Go figure.
It is sort of my little sanctuary. It has moon flowers, cardinal vine, cypress vines, begonias, impatiens, cannas, dahlias, a couple of roses, and yellow and red angels trumpet. And to think this patio is only the width of our condo (about23 feet) and about 6 or 7 feet deep. I barely have room for a chair and small table. It is nice to go out and relax under the shade of a makeshift arbor. It is very quiet where we live and you can almost forget that we live in the “big city”. Quiet enough I can still hear Thump, thump, wisp, wisp; Thump, thump, wisp, wisp; Thump, thump, wisp, wisp…… It never quite goes away.
All in all, it really was a great day. I even went and soaked my legs in the hot tub. I cannot get total emerged, but even going mid thigh was real treat. I know it is risky. If I slide and got the batteries or my controller wet, it would sort of be “all she wrote”. But life is all about defining the risk one is willing to take in almost every aspect of our lives. Flying, driving, living, getting out of bed in morning; they all have some element of risk.
I, my partner, and my family went for the risk of having this LVAD implant. And I will be forever grateful for that decision and their support of my living and my continued recovery. But I have made it, I survived and am alive. Thump, thump, wisp,wisp; Thump, thump, wisp, wisp; Thump, thump, wisp, wisp……it will always serve as a reminder that I am alive. The rest is up to me to define or determine what risks I live with. When I think that with the flip of a switch or my device fails for some mechanical reason, my LVAD could stop. AND SO MY LIFE WOULD PROBABLY END ALSO.
So I do the things I want to do as long as my stamina holds up and I feel like I can control the risk. There now are some things I will not do when I am alone. It is not that I feel I couldn’t do them on my own, but if………I actually had one of the situations not long ago after coming home. I learned I can’t just ABSENTMINDEDLY do whatever action/thought that comes to mind or presents itself in my life.
I remember about 6 weeks after I came home from the hospital I did have one of those gotcha moments. I was in the living room and saw that one of the vertical blind slats had come down. I thought to myself, no big deal, I can re-hang it. Of course the traverse rod was not in reach from the floor so I grab the nearest chair to stand on – a spongy one at that. I know I have done this several times before. So I stood on the chair – and GOTCHA! I lost my balance and fell head first on the floor. I was bleeding, LVAD controller alarm was sounding, can I get up, what do I do? As much as had preiosly walked through scenarios of an emergency, it never totally prepares you. Every situation is different and I know I must assess the situation immediately, Do I need help, how much help. Do I need an ambulance? Lord I really didn’t want to have to call 911.
I could get up and discover that I had broken one of the battery holsters and I could connect only one of the batteries! Fortunately there are two batteries that operate in tandem, so it was still working from the one battery. But it does mean I need to go upstairs and get on my power tether of my PBU (power base unit). I think need to attend to the cut on head as it was bleeding profusely.
My first concern was to stop the bleeding. My head really hurt, but I hit a Mexican tile floor pretty hard. So I put ice in a towel and applied pressure to my head…… the LVAD alarm is still sounding. I thought, OK I have to make plan of things I need to do. The bleeding does not seem to be slowing down as I feel the warm trail of blood curling around my neck.
I realize I need more help than I can provide myself. I tried my partner’s cell phone, but it is here in the kitchen. OH GOD….I realize I really do need to call 911! Something I really didn’t relish doing but it had to be done. I certainly was not successful in trying to stabilize my situation. I was still bleeding profusely and I need to get hooked up to the LVAD power supply upstairs. I have to call 911. I don’t want them breaking the front door open…..oh but the patio door is open, only the screen door is closed. OK.
So I go upstairs, hook up to my PBU….the alarm goes silent. Thanks God, I was really getting scared that I may have damaged the LVAD from the fall, but all seems to be fine now. Now, call 911, there is blood everywhere, it is not clotting, oh it hurts. The 911 operator was great, she stayed on the phone until the ambulance arrived. I had to explain my special circumstances. The ambulance must be able to provide 120 volt for my power supply to hook up. It and all my gear must go with me. I am still bleeding. I will admit the emergency folks and fireman were extremely attentive. I explained my LVAD setup. They managed to carry me and my gear (and all my med’s, batteries, etc. l the way down to the ambulance – over two flights – 37 stairs to be exact.
So off to the hospital we go. I couldn’t convince them to take me to Cedars and ended up at Sherman OAKS. So I give another class on my LVAD to their emergency team. Of course they have never seen it before, so I sort of was the patient on parade. That’s OK, I actually do not mind talking about the LVAD. Meanwhile they had to pump 4 pints of blood in me. (We won’t discuss what a mess the house was left in as I had been in almost every area and bleeding apparently heavier than I thought. They ended up stapling my head, getting me stabilized and then transferred to Cedars Sinai Hospital. I was in the hospital for 4 days and release. Although I did get a stern scolding on checkout! I was lucky, lucky indeed!
Fortunately I did not have a concussion. I also never lost consciousness or an overwhelming sense of panic. I think I stayed relatively calm through the whole thing. But…… what if I had lost consciousness at any point before calling 911? I probably would not be alive. Instead, my partner would have come found me bled out on the floor. I don’t need to have someone else around at all times. But I certainly do if I am doing any major physical activity where I could fall. (I won’t even change a light switch Don or a good friend here.
Things very easily could have turned out different. It certainly was another life changing event that remolded my way of approaching things. I think about what could go awry and I try to be prepared. Do I have enough spare batteries with me? Do I have my cell phone? Am I up to the task physically? What impact will the activity have on my heart/LVAD? How can I minimize a negative outcome?
I do still push limits or the line in the sand as they say. I probably am a little more independent and self sufficient than other LVAD Destination Therapy recipients. I workout at the gym, I ride my bike. I do drive by myself. I could be out of the house for a good part of the day, going to the doctor, running errands, or take my dog for a long walk. If I am home, I probably go up and down the stairs 20-30 times a day. It doesn’t matter which floor I am on, I always seem to want or need something and it is on another floor. Oh well the steps are good for my heart right? I think so.
So things are indeed different and probably will be for the foreseeable future. My LVAD will need to be replaced in the next year or so, but the next generation promises to be quieter and probably will last around 7-10 years verses the 2 years or so for this model. It is also a rotary desire, so I will no longer have a pulse, no traditional method to measure my “equivalent heart rate” or blood pressure. It will be starting a new chapter and relearning what my parameters will be as I adapt to another version of life.
Is how I measure a DAY!
Thump, thump, wisp, wisp; Thump, thump, wisp, wisp; Thump, thump, wisp,wisp….. My LVAD just keeps pumping away; somewhere in the neighborhood of One Hundred Twenty Nine Thousand Six Hundred Minutes – EVERYDAY! It is definitely audible in a quiet room and something I can always feel working, almost regardless of the activity. Its beat is pretty strong, think of how you feel your heart - when you have been scared shitless, or run to catch a plane. I am not complaining, just a frustration. I saw the theatrical product of Dolly Pardon’s “9 to 5”. The thought crossed my mind of what if my LVAD only needed to run “9 to 5”. Of course that would only be 43,200 beats. Unfortunately it must work relentlessly 24 hours per day. Thump, thump, wisp, wisp; Thump, thump, wisp, wisp; Thump, thump, wisp, wisp…… on it goes.
Today was a beautiful day. But because of my LVAD, I am not only still here; but I had a fairly typical Sunday as compared to before all this heart failure business. We rose early so we could watch Meet The Press. Actually this is something I never used to do as I never really had or made the time to keep up with politics. So I can say LVAD has definitely allowed me to do things had wished I could do.
Then we went to our little Farmers Market in Studio City. It is just around the corner so to speak. Afterwards, it is off the Trader Joe’s and other errands. Got home and put a big o’ kettle of red beans and rice on the stove. (Oh I miss going to New Orleans) I don’t really know how to make a little bit of anything as it never is quite right until the kettle is full. I guess it is a carryover from my childhood where dinner was “supper” and having neighbors over to eat was not un common (or vica versa) just an opportunity to share our table and our lives. (Of course we had a big ole freezer for leftovers also.)
Anyway, from the kitchen I proceeded to work in my patio garden. We live in a condo, so the patio is the only garden I have – BUT IT HAS BECOME A JUNGLE OUT THERE. I start cuttings for friends, dividing other plants, deadheading flowers to promote more flowers. I even have 8 hummingbird feeders. A friend got me started by giving me a very nice blown glass feeder for my birthday a couple of years ago. Now I just keep adding to the collection. The funny thing is the hummingbirds seem to like the cheep tacky plastic feeders the best! Go figure.
It is sort of my little sanctuary. It has moon flowers, cardinal vine, cypress vines, begonias, impatiens, cannas, dahlias, a couple of roses, and yellow and red angels trumpet. And to think this patio is only the width of our condo (about23 feet) and about 6 or 7 feet deep. I barely have room for a chair and small table. It is nice to go out and relax under the shade of a makeshift arbor. It is very quiet where we live and you can almost forget that we live in the “big city”. Quiet enough I can still hear Thump, thump, wisp, wisp; Thump, thump, wisp, wisp; Thump, thump, wisp, wisp…… It never quite goes away.
All in all, it really was a great day. I even went and soaked my legs in the hot tub. I cannot get total emerged, but even going mid thigh was real treat. I know it is risky. If I slide and got the batteries or my controller wet, it would sort of be “all she wrote”. But life is all about defining the risk one is willing to take in almost every aspect of our lives. Flying, driving, living, getting out of bed in morning; they all have some element of risk.
I, my partner, and my family went for the risk of having this LVAD implant. And I will be forever grateful for that decision and their support of my living and my continued recovery. But I have made it, I survived and am alive. Thump, thump, wisp,wisp; Thump, thump, wisp, wisp; Thump, thump, wisp, wisp……it will always serve as a reminder that I am alive. The rest is up to me to define or determine what risks I live with. When I think that with the flip of a switch or my device fails for some mechanical reason, my LVAD could stop. AND SO MY LIFE WOULD PROBABLY END ALSO.
So I do the things I want to do as long as my stamina holds up and I feel like I can control the risk. There now are some things I will not do when I am alone. It is not that I feel I couldn’t do them on my own, but if………I actually had one of the situations not long ago after coming home. I learned I can’t just ABSENTMINDEDLY do whatever action/thought that comes to mind or presents itself in my life.
I remember about 6 weeks after I came home from the hospital I did have one of those gotcha moments. I was in the living room and saw that one of the vertical blind slats had come down. I thought to myself, no big deal, I can re-hang it. Of course the traverse rod was not in reach from the floor so I grab the nearest chair to stand on – a spongy one at that. I know I have done this several times before. So I stood on the chair – and GOTCHA! I lost my balance and fell head first on the floor. I was bleeding, LVAD controller alarm was sounding, can I get up, what do I do? As much as had preiosly walked through scenarios of an emergency, it never totally prepares you. Every situation is different and I know I must assess the situation immediately, Do I need help, how much help. Do I need an ambulance? Lord I really didn’t want to have to call 911.
I could get up and discover that I had broken one of the battery holsters and I could connect only one of the batteries! Fortunately there are two batteries that operate in tandem, so it was still working from the one battery. But it does mean I need to go upstairs and get on my power tether of my PBU (power base unit). I think need to attend to the cut on head as it was bleeding profusely.
My first concern was to stop the bleeding. My head really hurt, but I hit a Mexican tile floor pretty hard. So I put ice in a towel and applied pressure to my head…… the LVAD alarm is still sounding. I thought, OK I have to make plan of things I need to do. The bleeding does not seem to be slowing down as I feel the warm trail of blood curling around my neck.
I realize I need more help than I can provide myself. I tried my partner’s cell phone, but it is here in the kitchen. OH GOD….I realize I really do need to call 911! Something I really didn’t relish doing but it had to be done. I certainly was not successful in trying to stabilize my situation. I was still bleeding profusely and I need to get hooked up to the LVAD power supply upstairs. I have to call 911. I don’t want them breaking the front door open…..oh but the patio door is open, only the screen door is closed. OK.
So I go upstairs, hook up to my PBU….the alarm goes silent. Thanks God, I was really getting scared that I may have damaged the LVAD from the fall, but all seems to be fine now. Now, call 911, there is blood everywhere, it is not clotting, oh it hurts. The 911 operator was great, she stayed on the phone until the ambulance arrived. I had to explain my special circumstances. The ambulance must be able to provide 120 volt for my power supply to hook up. It and all my gear must go with me. I am still bleeding. I will admit the emergency folks and fireman were extremely attentive. I explained my LVAD setup. They managed to carry me and my gear (and all my med’s, batteries, etc. l the way down to the ambulance – over two flights – 37 stairs to be exact.
So off to the hospital we go. I couldn’t convince them to take me to Cedars and ended up at Sherman OAKS. So I give another class on my LVAD to their emergency team. Of course they have never seen it before, so I sort of was the patient on parade. That’s OK, I actually do not mind talking about the LVAD. Meanwhile they had to pump 4 pints of blood in me. (We won’t discuss what a mess the house was left in as I had been in almost every area and bleeding apparently heavier than I thought. They ended up stapling my head, getting me stabilized and then transferred to Cedars Sinai Hospital. I was in the hospital for 4 days and release. Although I did get a stern scolding on checkout! I was lucky, lucky indeed!
Fortunately I did not have a concussion. I also never lost consciousness or an overwhelming sense of panic. I think I stayed relatively calm through the whole thing. But…… what if I had lost consciousness at any point before calling 911? I probably would not be alive. Instead, my partner would have come found me bled out on the floor. I don’t need to have someone else around at all times. But I certainly do if I am doing any major physical activity where I could fall. (I won’t even change a light switch Don or a good friend here.
Things very easily could have turned out different. It certainly was another life changing event that remolded my way of approaching things. I think about what could go awry and I try to be prepared. Do I have enough spare batteries with me? Do I have my cell phone? Am I up to the task physically? What impact will the activity have on my heart/LVAD? How can I minimize a negative outcome?
I do still push limits or the line in the sand as they say. I probably am a little more independent and self sufficient than other LVAD Destination Therapy recipients. I workout at the gym, I ride my bike. I do drive by myself. I could be out of the house for a good part of the day, going to the doctor, running errands, or take my dog for a long walk. If I am home, I probably go up and down the stairs 20-30 times a day. It doesn’t matter which floor I am on, I always seem to want or need something and it is on another floor. Oh well the steps are good for my heart right? I think so.
So things are indeed different and probably will be for the foreseeable future. My LVAD will need to be replaced in the next year or so, but the next generation promises to be quieter and probably will last around 7-10 years verses the 2 years or so for this model. It is also a rotary desire, so I will no longer have a pulse, no traditional method to measure my “equivalent heart rate” or blood pressure. It will be starting a new chapter and relearning what my parameters will be as I adapt to another version of life.
Sunday, September 14, 2008
WHERE AM I GOING WITH MY LVAD, WHERE ARE WE GOING AS A NATION?????
I won’t apologize for my last column being about politics, nor will I apologize for continuing to make reference to the ongoing issues with the upcoming election or the incredible unforgivable failures of our government. Many of our government’s failures may seem small, but when you add them all up it shows what a failure our current administration has been as well as a direction we cannot afford to continue. Besides, repeated failures do point to a trend we can’t allow to continue.
I am starting another blog where I will continue to share my political views and concerns regarding the election and our current administration. It will cost you as I certainly will be throwing in my two cents worth.
The other blog will be at: http://josh-politics.blogspot.com/
I will be posting to this site shortly.
Now back to life with “MY LVAD”. I went to a new support group for LVAD recipients this past week. It has been going for about 3 or 4 months with monthly meetings. This last meeting had the largest number of attendees (it includes both past, current and future recipients as well as their caregivers). It is a monumental task for both patients and caregivers to take on this procedure. Adapting to living with an LVAD calls for a lot from the recipient and caregiver, friends, and family.
I was one of two recipients with LVAD as destination therapy, everyone else were caregivers or bridge to transplant. I was surprised how different or how far I have come verses those who are only a 2 or three months post implantation. They still are adapting to living on a power cable or batteries. And most are never left alone. I actually spent two weeks by myself this summer while my partner was away on a school trip. I drove alone, did my shopping, and worked on a couple of home projects. The group meeting certainly raised my awareness of the progress I have made. Most were present with their caregivers as they do not drive alone yet. Although driving, cycling, riding a motorcycle, dune buggy riding is possible allthough not quite encouraged or recommended by our cardiologists, there are those of us who are “MAVORIC ENOUGH” to push or break the barriers of approved or recommended activities. (It is a shame that McCain and Palin have yet to prove themselves as real stewards of change and reform; he has had 6 terms as a senator failing to show reform; and Palin has only pursued her own interests in her short career in politics. I have yet to see them as MAVERICs. OK, I know enough of my stump fodder.)
Today, we cleaned the garage. It is almost like the commercial where a lady has to user her keyless remote to locate her car in the garage. Our garage is not far from that. There is no way we could get two cars in our garage even if they were compacts!). My partner has two artificial shoulders (and an artificial hip), so between us we have enough titanium, we could retire! Anyway, he can’t really lift things over his head. I am not supposed to either, both because of the LVAD tubing in my gut, but also because I have a biventricular pacemaker that has three metal leads going through my chest to my heart. But then, how often have I followed the rules (not very….)
Fortunately it was not too hot today. That is not to say I didn’t work up a sweat, I did. I setup 2 metal “angle iron” type shelves. Then I started going through boxes that haven’t been looked at since we moved here (13 years ago). Old shoes, commemorative T-shirts, Mardi-Gras beads, I couldn’t believe the crap that had been sitting down there. My partner, Don, is a school teacher and just moved from teaching the 3rd grade to teaching the 2nd grade. So we had all kinds of boxes with teaching materials for the 3rd grade plus new materials we have been acquiring for the 2nd grade. Well we only made it have way through. I did all the lifting, surprise…..surprise. It really wasn’t problem except I am beat and can feel my body getting stiff. I need to buy probably about 4 more shelving units to finish the job. Hopefully it will look like someone civilized actually lives here soon.
So it has been a busy long day, but the positive thing is I was able to do it. It would be tough doing it every day though. Maybe in the next support group meeting, I will try and share more about slowly extending ones’ limits. I would say that if I was conscious enough to answer what I thought I would be able to do now a year later after my LVAD implant.; I tell you it certainly wouldn’t have included cleaning out the garage, pushing, lifting boxes weighing 30, 40, maybe even 50#’s. I can do a lot of living with my LVAD.
When I inventory the list of things I can do, it is pretty long. Gardening, walking the dog (Tully – our “parti” Miniature Schnauzer who is a little hyperactive), driving, cycling, work at the gym if I choose. In spite of the exit tube in my gut, I can now (finally) lay down on my left and right sides, or flat on my stomach. I can touch my toes; do sit-ups, crunches, and pushups. I know doing these things may not seem like much to the average “jo”, but they really are significant accomplishments for someone who had to learn how to get out of bed again or how to walk again. Looking back it is really hard to believe.
I remember my physical therapist. He would make me do my exercises even when I didn’t feel like it, but also who would slow me down when I got to aggressive. I must thank him for his incredible drive, enthusiasm, and patience. Little did he know that his therapy would serve as a foundation for what I am now capable of and so much more.
There are a number of things I cannot do that are a struggle to accept. In particular, becoming immersed in water (tub, show, hot tub, swimming, snorkeling or diving) is off limits with the version LVAD I have because of the exit tube in my gut via an “open wound” which connects to the external electrical support and the bladder air exchange. I guess what really made me think about this particular limitation was finding my old snorkeling gear. I remember my gear was not cheap. I didn’t throw them out as I have the foolish notion that someday, there will be a better solution LVAD that would allow me to swim and get wet….or enjoy a plain old fashion shower. Mmmmmm……
I am not complaining as I am doing more than I ever thought possible. I do get tired and need to take frequent breaks, but the fact stands, I am alive and I can still live life! And perhaps I do have something to share that might help someone else discover that recovery has many horizons, and you just have to cross them carefully and one at a time. I have crossed many, but I know my journey will have many more.
Living with LVAD, even with it must do’s and don’ts has brought me further than I ever thought possible. For those of you in the early stages of recovery, take your time as it does get better! Pursue something new every day, another step, another 10, sit up longer, or an extra smile to your caregiver(s). Even go watch a sunrise or sunset as you have had both occur in your life (or seen it happen in a life as caregiver)– but see mother nature doing it. Living with LVAD day to day can seem overwhelming, but it is manageable. Notice how Mother Nature continues to do it every day and we can do it too!
Namastè
Two roads diverged in a wood, and I--I took the one less traveled by,And that has made all the difference. (Robert Frost)
I am starting another blog where I will continue to share my political views and concerns regarding the election and our current administration. It will cost you as I certainly will be throwing in my two cents worth.
The other blog will be at: http://josh-politics.blogspot.com/
I will be posting to this site shortly.
Now back to life with “MY LVAD”. I went to a new support group for LVAD recipients this past week. It has been going for about 3 or 4 months with monthly meetings. This last meeting had the largest number of attendees (it includes both past, current and future recipients as well as their caregivers). It is a monumental task for both patients and caregivers to take on this procedure. Adapting to living with an LVAD calls for a lot from the recipient and caregiver, friends, and family.
I was one of two recipients with LVAD as destination therapy, everyone else were caregivers or bridge to transplant. I was surprised how different or how far I have come verses those who are only a 2 or three months post implantation. They still are adapting to living on a power cable or batteries. And most are never left alone. I actually spent two weeks by myself this summer while my partner was away on a school trip. I drove alone, did my shopping, and worked on a couple of home projects. The group meeting certainly raised my awareness of the progress I have made. Most were present with their caregivers as they do not drive alone yet. Although driving, cycling, riding a motorcycle, dune buggy riding is possible allthough not quite encouraged or recommended by our cardiologists, there are those of us who are “MAVORIC ENOUGH” to push or break the barriers of approved or recommended activities. (It is a shame that McCain and Palin have yet to prove themselves as real stewards of change and reform; he has had 6 terms as a senator failing to show reform; and Palin has only pursued her own interests in her short career in politics. I have yet to see them as MAVERICs. OK, I know enough of my stump fodder.)
Today, we cleaned the garage. It is almost like the commercial where a lady has to user her keyless remote to locate her car in the garage. Our garage is not far from that. There is no way we could get two cars in our garage even if they were compacts!). My partner has two artificial shoulders (and an artificial hip), so between us we have enough titanium, we could retire! Anyway, he can’t really lift things over his head. I am not supposed to either, both because of the LVAD tubing in my gut, but also because I have a biventricular pacemaker that has three metal leads going through my chest to my heart. But then, how often have I followed the rules (not very….)
Fortunately it was not too hot today. That is not to say I didn’t work up a sweat, I did. I setup 2 metal “angle iron” type shelves. Then I started going through boxes that haven’t been looked at since we moved here (13 years ago). Old shoes, commemorative T-shirts, Mardi-Gras beads, I couldn’t believe the crap that had been sitting down there. My partner, Don, is a school teacher and just moved from teaching the 3rd grade to teaching the 2nd grade. So we had all kinds of boxes with teaching materials for the 3rd grade plus new materials we have been acquiring for the 2nd grade. Well we only made it have way through. I did all the lifting, surprise…..surprise. It really wasn’t problem except I am beat and can feel my body getting stiff. I need to buy probably about 4 more shelving units to finish the job. Hopefully it will look like someone civilized actually lives here soon.
So it has been a busy long day, but the positive thing is I was able to do it. It would be tough doing it every day though. Maybe in the next support group meeting, I will try and share more about slowly extending ones’ limits. I would say that if I was conscious enough to answer what I thought I would be able to do now a year later after my LVAD implant.; I tell you it certainly wouldn’t have included cleaning out the garage, pushing, lifting boxes weighing 30, 40, maybe even 50#’s. I can do a lot of living with my LVAD.
When I inventory the list of things I can do, it is pretty long. Gardening, walking the dog (Tully – our “parti” Miniature Schnauzer who is a little hyperactive), driving, cycling, work at the gym if I choose. In spite of the exit tube in my gut, I can now (finally) lay down on my left and right sides, or flat on my stomach. I can touch my toes; do sit-ups, crunches, and pushups. I know doing these things may not seem like much to the average “jo”, but they really are significant accomplishments for someone who had to learn how to get out of bed again or how to walk again. Looking back it is really hard to believe.
I remember my physical therapist. He would make me do my exercises even when I didn’t feel like it, but also who would slow me down when I got to aggressive. I must thank him for his incredible drive, enthusiasm, and patience. Little did he know that his therapy would serve as a foundation for what I am now capable of and so much more.
There are a number of things I cannot do that are a struggle to accept. In particular, becoming immersed in water (tub, show, hot tub, swimming, snorkeling or diving) is off limits with the version LVAD I have because of the exit tube in my gut via an “open wound” which connects to the external electrical support and the bladder air exchange. I guess what really made me think about this particular limitation was finding my old snorkeling gear. I remember my gear was not cheap. I didn’t throw them out as I have the foolish notion that someday, there will be a better solution LVAD that would allow me to swim and get wet….or enjoy a plain old fashion shower. Mmmmmm……
I am not complaining as I am doing more than I ever thought possible. I do get tired and need to take frequent breaks, but the fact stands, I am alive and I can still live life! And perhaps I do have something to share that might help someone else discover that recovery has many horizons, and you just have to cross them carefully and one at a time. I have crossed many, but I know my journey will have many more.
Living with LVAD, even with it must do’s and don’ts has brought me further than I ever thought possible. For those of you in the early stages of recovery, take your time as it does get better! Pursue something new every day, another step, another 10, sit up longer, or an extra smile to your caregiver(s). Even go watch a sunrise or sunset as you have had both occur in your life (or seen it happen in a life as caregiver)– but see mother nature doing it. Living with LVAD day to day can seem overwhelming, but it is manageable. Notice how Mother Nature continues to do it every day and we can do it too!
Namastè
Two roads diverged in a wood, and I--I took the one less traveled by,And that has made all the difference. (Robert Frost)
Wednesday, September 10, 2008
Survive LVAD for a year for this!
Survive LVAD for a year for this!
I had told myself that the primary reason for this blog was to document my journey with my LVAD implant, pacemaker, and AIDS, etc; but for this entry I have to step outside of that primary objective.
I DID NOT SURVIVE THIS LAST YEAR TO LOOK FORWARD TO ANOTHER 4 YEARS OF MCBUSHIAN POLITICS.
Let's see, by my last blog post, that would be 2,098,400 minutes for a 4 year term. Over 2 MILLION MINUTES!
Before McCain picked his running mate, I was not too worried about McCain as having a significant chance of beating the democrats. ( I actually voted for Hillary, but will take Obama over McCain any day.) But now after picking Palin as his running mate and the response in the polls, I now fear that the American public maybe letting him pull the wool over their eyes.
I will give him credit for his service to this country in the military, most specifically his service in Vietnam. (My older brother had multiple tours of duty in Vietnam and I wouldn't want him for president, sorry brother.) Nor will I discredit his years served in the senate for his state, assuming he has represented their interests fairly. But these two facts do not add up to him being the best candidate for president in these times. After the last 8 years this country and its citizens are in the worst financial shape in as many decades. The country and the average citizen are in the deepest debt ever in American history. We have the lowest respect politically globally in at least as many decades.
Then let’s look at his choice of running mates, Sarah Palin. In everything I have read that didn’t come from the McCain campaign; I have had a difficult time finding the integrity of his choice or within the candidate herself that we as citizens should expect. In her short time in politics, she has shown to be an astute opportunist. She definitely knows how to manipulate the system to her benefit. She may have said the final work of “no thank you” to the bridge to nowhere when it was popular, but she was a strong supporter prior to that. She may say she is against earmarks now, but it certainly did not stop her from getting 27 million dollars in earmarks when she was mayor.
She touts fiscal conservatism, but she assumed the office of mayor for Wasilla, Alaska; a town of 7000 with $0 debt and left it with more than $20 million in debt. (That is almost 3,000 dollars for every man, women, and child of the town of Wasilla!) Is this the sort of fiscal experience we are looking for?
There are many other untruths uttered by her. However that brings me back to wonder how sound a decision was it for McCain to select her out of a field of significantly more qualified and capable folks, men and WOMEN. Or was this one of those brain farts we come to expect as we grow old. (I know, I have them to; but do we want this as a shining quality in the man who will be taking that call at 3:00 A.M.?)
In the last few days we have received announcements of unemployment rising again up to 6.1% (6th month of consecutive increases to a 5 year HIGH). The federal Government has assumed control of Fannie Mae and Freddy Mac (and therefore the debt and securities – 5 trillion dollars – I forget how many ZERO’s that is behind the 5!, but it works out to about $1,600(CORRECTION $16,000) per US citizen - I know i don't need another bill for $1,600...(CORRECTION $16,000). Then to allow the CEO's of Fannie Mae and Freddy Mac to walk away with millions of dollars in compensation bonuses! That we have spent more on the war in Iraq than it would take to shore up our education and social security programs!
I do consider myself a very spiritual person; but to think that the religious right may have undue influence in a country that prides itself with separation of church and state and at the same time providing for freedom of religion, this does not represent the rights guaranteed us under the U.S. Constitution. They have made it clear they do not believe that all men (women too) are created equal in the eyes of GOD. It used to be that it was only right for a white man to marry a white woman. And in the unwritten rules on top of that: catholic must mary a catholic, Jew to Jew, protestant to protestant, Negro to Negro, Irish to Irish, Chinese to Chinese, etc…..there were so many unwritten rules as to who it was appropriate to love whom. Do we want to go back to this way of thinking, where women did not have the right to choose whether early stage abortion was right for them? After all it is their body! Do we really want a government that continues to erode at our right to our privacy? Our telephones, our email, our BEDROOM?
I have to say proudly that I will be voting Obama & Biden!
If you want more details on their “SPECIFICS”, please use the following link for DETAILS.
http://www.barackobama.com/issues/
The Obama/Biden ticket may not be perfect(is there such a thing?), it is a hell of a lot better than 4 more years of what we have had for the last 8 years. We do need a change from the Republican Party’s way of doing things. To flip flop and/or lie about what they stand for, unable to decide what the important issues really are, to join the reform and change platform only after picking an inexperienced vice presidential candidate that has already been caught in numerous lies and half truths about her stance on reform; I mean what is it they really stand for? I don’t know about you, but when I was brought up, there was no such thing as a half truth, it was either a LIE or it is the truth.
OBAMA/BIDEN – THE ONLY REAL CHOICE?
CIVIL RIGHTS: To continue breaking thru the barriers that hinder true equality of all citizens.
DEFENSE: To insure proper support of our troops with the right equipment and comparable pay as in the private, and make sure they are properly deployed in fighting the RIGHT battles and war(s).
DISABILITIES: "We must build a world free of unnecessary barriers, stereotypes, and discrimination .... policies must be developed, attitudes must be shaped, and buildings and organizations must be designed to ensure that everyone has a chance to get the education they need and live independently as full citizens in their communities." (Direct from website)
ECONOMY: If we all haven’t been feeling this one in the pocket book, YOU MAKE TO MUCH MONEY. Not that you should be punished for that, but when I made more, I gave more. Now that I am on disability, it is less. And as the economy worsens, it will become more and more difficult. I don’t believe it is fair or right for us to continue giving tax breaks to corporations that seems to be having no problem in improving their bottom line; THIS SHOULD NOT BE AT THE EXPENSE OF THE AMERICAN CITIZEN. I have lived both sides of the coin with regard to wealth, and still feel it is unfair to provide tax breaks that are weighted towards the “rich”. Defining rich or wealthy as those making over $250,000 annually is still awfully wealthy. If I only still made over a $100,000 annually would be a treat in my book!
EDUCATION: What can I say, we have dropped to a tie with Mexico at 19th for the lowest high school graduation rate in the industrialized world. Is this something we can be proud of? No child left behind has only given us more kids who if they make it to graduation, cannot read or write at an 8th grade level or better. Then again, is graduating at an 8th grade level what we should be proud of. We must have proper funding, and consistent and better ways of measuring performance of both teachers and students.
ENERGY AND ENVIRONMENT: I don’t think Energy could be more important because of its fundamental impact on the Environment, the Economy, and just about every component of our daily lives. Obama has been a leader in the senate to establish a comprehensive energy policy that will support achieving energy independence.
There are many more details to the issues I have noted as well as many other issues and positions. They are detailed, comprehensive, and understandable by the average “jo” like you and me. And for those who think they are better than the average “jo”, then you certainly will have no problem.
All I know is history has proven to repeat itself! Democratic administrations have consistently outperformed republic administrations.
The scoreboard for the Democrats versus the Republicans so to speak:
--the economy has improved during democratic administrations
--number of citizens living in poverty declined by number and percent (except during Jimmy Carter)
--real growth averaged 4.09% for Democrats versus 2.75% for Republicans
--unemployment averaged 5.33% for Democrats versus 6.44% for Republicans
--inflation was lower on average (Dem – 3.81% versus Rep - 4.85%)
--the national debt was reduced or grew at a slower rate under the Democratic Administration
--the national debt took on more than twice the % of the Gross Domestic Product under the GOP on average versus Democrats (Dem-1.21% versus growing by more than 2.74% under the Republicans)
--unemployment rates dropped……
To see more, check out: Economic Performance Democrats vs Republicans.
The Republicans say they want to reduce government spending, but they have OUTSPENT Democrat administrations. “The federal government spent more under Republicans than Democrats (20.87% of gross domestic product, compared with 19.58%), and that remains true even if you exclude defense (13.76% for the Democrats; 14.97% for the Republicans).”( DO THE MATH by Michael Kinsley-Washington Post)
The McCain says he is the symbol of change, but has sided with Bush 90% of the time versus Obama only 50% of the time. Does that sound like change? I could be 200 pounds overweight, and say I lost 10 pounds and that I have changed. It is a start, but not a PATTERN of change we need for president.
Another republican administration will just mean more of the same. Change and reform is needed, and it must start from the bottom up as well as the top down. Therefore get out and support change from the top down by generating support from the bottom up……
VOTE THE OBAMA/BIDEN TICKET – CHANGE THAT WE CAN LIVE WITH!
For those in California, VOTE NO on PROPOSITION 8!
I WON’T APOLOGIZE FOR SOUNDING OFF POLITICALLY, but if I am going to survive life by having an LVAD, Pacemaker, and living with AIDS, I want to have a country that will survive as well.
Namasté
I had told myself that the primary reason for this blog was to document my journey with my LVAD implant, pacemaker, and AIDS, etc; but for this entry I have to step outside of that primary objective.
I DID NOT SURVIVE THIS LAST YEAR TO LOOK FORWARD TO ANOTHER 4 YEARS OF MCBUSHIAN POLITICS.
Let's see, by my last blog post, that would be 2,098,400 minutes for a 4 year term. Over 2 MILLION MINUTES!
Before McCain picked his running mate, I was not too worried about McCain as having a significant chance of beating the democrats. ( I actually voted for Hillary, but will take Obama over McCain any day.) But now after picking Palin as his running mate and the response in the polls, I now fear that the American public maybe letting him pull the wool over their eyes.
I will give him credit for his service to this country in the military, most specifically his service in Vietnam. (My older brother had multiple tours of duty in Vietnam and I wouldn't want him for president, sorry brother.) Nor will I discredit his years served in the senate for his state, assuming he has represented their interests fairly. But these two facts do not add up to him being the best candidate for president in these times. After the last 8 years this country and its citizens are in the worst financial shape in as many decades. The country and the average citizen are in the deepest debt ever in American history. We have the lowest respect politically globally in at least as many decades.
Then let’s look at his choice of running mates, Sarah Palin. In everything I have read that didn’t come from the McCain campaign; I have had a difficult time finding the integrity of his choice or within the candidate herself that we as citizens should expect. In her short time in politics, she has shown to be an astute opportunist. She definitely knows how to manipulate the system to her benefit. She may have said the final work of “no thank you” to the bridge to nowhere when it was popular, but she was a strong supporter prior to that. She may say she is against earmarks now, but it certainly did not stop her from getting 27 million dollars in earmarks when she was mayor.
She touts fiscal conservatism, but she assumed the office of mayor for Wasilla, Alaska; a town of 7000 with $0 debt and left it with more than $20 million in debt. (That is almost 3,000 dollars for every man, women, and child of the town of Wasilla!) Is this the sort of fiscal experience we are looking for?
There are many other untruths uttered by her. However that brings me back to wonder how sound a decision was it for McCain to select her out of a field of significantly more qualified and capable folks, men and WOMEN. Or was this one of those brain farts we come to expect as we grow old. (I know, I have them to; but do we want this as a shining quality in the man who will be taking that call at 3:00 A.M.?)
In the last few days we have received announcements of unemployment rising again up to 6.1% (6th month of consecutive increases to a 5 year HIGH). The federal Government has assumed control of Fannie Mae and Freddy Mac (and therefore the debt and securities – 5 trillion dollars – I forget how many ZERO’s that is behind the 5!, but it works out to about $1,600(CORRECTION $16,000) per US citizen - I know i don't need another bill for $1,600...(CORRECTION $16,000). Then to allow the CEO's of Fannie Mae and Freddy Mac to walk away with millions of dollars in compensation bonuses! That we have spent more on the war in Iraq than it would take to shore up our education and social security programs!
I do consider myself a very spiritual person; but to think that the religious right may have undue influence in a country that prides itself with separation of church and state and at the same time providing for freedom of religion, this does not represent the rights guaranteed us under the U.S. Constitution. They have made it clear they do not believe that all men (women too) are created equal in the eyes of GOD. It used to be that it was only right for a white man to marry a white woman. And in the unwritten rules on top of that: catholic must mary a catholic, Jew to Jew, protestant to protestant, Negro to Negro, Irish to Irish, Chinese to Chinese, etc…..there were so many unwritten rules as to who it was appropriate to love whom. Do we want to go back to this way of thinking, where women did not have the right to choose whether early stage abortion was right for them? After all it is their body! Do we really want a government that continues to erode at our right to our privacy? Our telephones, our email, our BEDROOM?
I have to say proudly that I will be voting Obama & Biden!
If you want more details on their “SPECIFICS”, please use the following link for DETAILS.
http://www.barackobama.com/issues/
The Obama/Biden ticket may not be perfect(is there such a thing?), it is a hell of a lot better than 4 more years of what we have had for the last 8 years. We do need a change from the Republican Party’s way of doing things. To flip flop and/or lie about what they stand for, unable to decide what the important issues really are, to join the reform and change platform only after picking an inexperienced vice presidential candidate that has already been caught in numerous lies and half truths about her stance on reform; I mean what is it they really stand for? I don’t know about you, but when I was brought up, there was no such thing as a half truth, it was either a LIE or it is the truth.
OBAMA/BIDEN – THE ONLY REAL CHOICE?
CIVIL RIGHTS: To continue breaking thru the barriers that hinder true equality of all citizens.
DEFENSE: To insure proper support of our troops with the right equipment and comparable pay as in the private, and make sure they are properly deployed in fighting the RIGHT battles and war(s).
DISABILITIES: "We must build a world free of unnecessary barriers, stereotypes, and discrimination .... policies must be developed, attitudes must be shaped, and buildings and organizations must be designed to ensure that everyone has a chance to get the education they need and live independently as full citizens in their communities." (Direct from website)
ECONOMY: If we all haven’t been feeling this one in the pocket book, YOU MAKE TO MUCH MONEY. Not that you should be punished for that, but when I made more, I gave more. Now that I am on disability, it is less. And as the economy worsens, it will become more and more difficult. I don’t believe it is fair or right for us to continue giving tax breaks to corporations that seems to be having no problem in improving their bottom line; THIS SHOULD NOT BE AT THE EXPENSE OF THE AMERICAN CITIZEN. I have lived both sides of the coin with regard to wealth, and still feel it is unfair to provide tax breaks that are weighted towards the “rich”. Defining rich or wealthy as those making over $250,000 annually is still awfully wealthy. If I only still made over a $100,000 annually would be a treat in my book!
EDUCATION: What can I say, we have dropped to a tie with Mexico at 19th for the lowest high school graduation rate in the industrialized world. Is this something we can be proud of? No child left behind has only given us more kids who if they make it to graduation, cannot read or write at an 8th grade level or better. Then again, is graduating at an 8th grade level what we should be proud of. We must have proper funding, and consistent and better ways of measuring performance of both teachers and students.
ENERGY AND ENVIRONMENT: I don’t think Energy could be more important because of its fundamental impact on the Environment, the Economy, and just about every component of our daily lives. Obama has been a leader in the senate to establish a comprehensive energy policy that will support achieving energy independence.
There are many more details to the issues I have noted as well as many other issues and positions. They are detailed, comprehensive, and understandable by the average “jo” like you and me. And for those who think they are better than the average “jo”, then you certainly will have no problem.
All I know is history has proven to repeat itself! Democratic administrations have consistently outperformed republic administrations.
The scoreboard for the Democrats versus the Republicans so to speak:
--the economy has improved during democratic administrations
--number of citizens living in poverty declined by number and percent (except during Jimmy Carter)
--real growth averaged 4.09% for Democrats versus 2.75% for Republicans
--unemployment averaged 5.33% for Democrats versus 6.44% for Republicans
--inflation was lower on average (Dem – 3.81% versus Rep - 4.85%)
--the national debt was reduced or grew at a slower rate under the Democratic Administration
--the national debt took on more than twice the % of the Gross Domestic Product under the GOP on average versus Democrats (Dem-1.21% versus growing by more than 2.74% under the Republicans)
--unemployment rates dropped……
To see more, check out: Economic Performance Democrats vs Republicans.
The Republicans say they want to reduce government spending, but they have OUTSPENT Democrat administrations. “The federal government spent more under Republicans than Democrats (20.87% of gross domestic product, compared with 19.58%), and that remains true even if you exclude defense (13.76% for the Democrats; 14.97% for the Republicans).”( DO THE MATH by Michael Kinsley-Washington Post)
The McCain says he is the symbol of change, but has sided with Bush 90% of the time versus Obama only 50% of the time. Does that sound like change? I could be 200 pounds overweight, and say I lost 10 pounds and that I have changed. It is a start, but not a PATTERN of change we need for president.
Another republican administration will just mean more of the same. Change and reform is needed, and it must start from the bottom up as well as the top down. Therefore get out and support change from the top down by generating support from the bottom up……
VOTE THE OBAMA/BIDEN TICKET – CHANGE THAT WE CAN LIVE WITH!
For those in California, VOTE NO on PROPOSITION 8!
I WON’T APOLOGIZE FOR SOUNDING OFF POLITICALLY, but if I am going to survive life by having an LVAD, Pacemaker, and living with AIDS, I want to have a country that will survive as well.
Namasté
Monday, September 8, 2008
"Five Hundred Twenty-Five Thousand Six Hundred Minutes"
"Five Hundred Twenty-Five Thousand Six Hundred Minutes,
How do you measure- Measure a Year…….
Five Hundred Twenty-Five Thousand Six Hundred Minutes,
How Do You Measure - A Year In The Life?"
The play: RENT Song: Seasons Of Love
How does one measure a year, how does one know that you are living life to its fullest. I did see this play on Broadway a number of years ago and fell in love with it as I could certainly identify with quite a few elements of the show. Being a gay man, diagnosed with AIDS, having lost my first lover (of 10 years) of AIDS as well as many friends, episodes of fighting my own demons of drinking, etc., and struggling to find my own path or journey in life; I could and still can identify with many elements of this play. This truly was a remarkable play that pulls the audience into the desperate and the disparate but yet similar lives of its players.
Now that there are so many treatments for AIDS, a number of us have become long term survivors. For those who have become infected with HIV or diagnosed with AIDS have a much higher chance of being long term survivors and living pretty normal lives. This should not change our perspective of the danger this disease presents and the impact it makes on peoples’ lives. Globally, there are many who do not have access to the treatments available today that I have benefitted from. This disease is still ravaging the lives of people all over the world, including here in the USA. Research and application of treatments and disease prevention still needs to remain a top priority (among many priorities) we have today.
I have been blessed in being a long term survivor, and now suffer with another health challenge of a weak enlarged heart with cardiomyopathy. As with other long term AIDS survivors, other ailments of growing older come into play. The effect of living for years with AIDS, taking the various medications (often times somewhat toxic), does take its toll on the body and emotions. In particular: the liver, kidneys, and the heart.
For me, my cardiomyopathy has grown to advanced stage heart failure. I have been fortunate that treatment with an LVAD to support my heart has allowed my life to continue. Just recently I celebrated my one year anniversary with the LVAD implant and it does make me reflect on the fact that my life has been extended by over a year at this time, provided I am measuring it by time in the traditional sense. But, there are so many other dimensions to living or being alive.
As Rent just did its final performance on Broadway, it surely has been a tribute to not only the writer/composer, Jonathan Larson (who unfortunately died of an undiagnosed aortic aneurysm the night before the show opened), but to all people who have faced the adversities of life. It is a challenge for those who have AIDS, as well as anyone who faces a life altering disease; to unravel how to survive. Finding the inspiration or motivation to pursue life can takes on a very different effort. It takes more than just going with the flow. It means taking the journey of life with a different set of “wheels”.
The basic principles of living are the same just as two different vehicles generally operate the same; but it is different. For me it has made the difference of life verses almost certain death. Living with LVAD has been an adjustment. Besides the daily routine stuff that has been added to my life, it is something that I am always and constantly aware of. Feeling it beat in my chest far harder than my own heart ever beat. Listening to the wispy sound it makes through the exit tube filter outside my abdomen also serves as a constant reminder as well. Some find the sounds soothing and serve to remind them that they are alive. I guess that also could be said of the heart rate monitor when you are in the hospital. At times it still seems to be somewhat of an intrusion.
There will never be the quiet of the night or the golden silence achieved during in meditation. One’s mind or my mind anyway, is always running in a dual modality. One is whatever I might normally be thinking about. But the second is listening to the various sounds associated with the LVAD. Do they all seem normal? Is there any irregularity that I should be noticing? Should I be anxious, or can I relax that all is indeed OK and the LVAD will continue doing the job it supposed to.
“Can I get on a ladder to change a light bulb?”
“Is it OK to do this when I am alone?”
“Do I have sufficient batteries for the activity or trip I am about to take? How long will I be gone? What chance is there that my trip my take longer than planned?”
“Will the battery alarm go off at an inconvenient time (like at the movies, or in a theatre, or the symphony hall?” I have been chastised for the noise it makes even without the battery alarm! It does make me think twice about some things, but then I don’t want to give up these activities either.
A lot of the time I can shut this out, but those thoughts always seem to be running through the back of my mind. I will admit I do spend a lot of time at home. Sometimes it is just because it is easier or finances are tight. Other times I do want to get out but can’t decide what to do or don’t want to do it by myself. I guess there are lots of things I could do.
I could shop, but I don’t particularly like to just shop around unless there is something I need. Even when there is something I need, often times it is something I can get on the internet just as easily, at a better price, and not have to waste the gas.
Well I won’t bore you with my dribble any longer; I actually have a date for lunch. I am actually getting out of the house for awhile! It will be so nice.
So on to my journey of life,
Namasté
How do you measure- Measure a Year…….
Five Hundred Twenty-Five Thousand Six Hundred Minutes,
How Do You Measure - A Year In The Life?"
The play: RENT Song: Seasons Of Love
How does one measure a year, how does one know that you are living life to its fullest. I did see this play on Broadway a number of years ago and fell in love with it as I could certainly identify with quite a few elements of the show. Being a gay man, diagnosed with AIDS, having lost my first lover (of 10 years) of AIDS as well as many friends, episodes of fighting my own demons of drinking, etc., and struggling to find my own path or journey in life; I could and still can identify with many elements of this play. This truly was a remarkable play that pulls the audience into the desperate and the disparate but yet similar lives of its players.
Now that there are so many treatments for AIDS, a number of us have become long term survivors. For those who have become infected with HIV or diagnosed with AIDS have a much higher chance of being long term survivors and living pretty normal lives. This should not change our perspective of the danger this disease presents and the impact it makes on peoples’ lives. Globally, there are many who do not have access to the treatments available today that I have benefitted from. This disease is still ravaging the lives of people all over the world, including here in the USA. Research and application of treatments and disease prevention still needs to remain a top priority (among many priorities) we have today.
I have been blessed in being a long term survivor, and now suffer with another health challenge of a weak enlarged heart with cardiomyopathy. As with other long term AIDS survivors, other ailments of growing older come into play. The effect of living for years with AIDS, taking the various medications (often times somewhat toxic), does take its toll on the body and emotions. In particular: the liver, kidneys, and the heart.
For me, my cardiomyopathy has grown to advanced stage heart failure. I have been fortunate that treatment with an LVAD to support my heart has allowed my life to continue. Just recently I celebrated my one year anniversary with the LVAD implant and it does make me reflect on the fact that my life has been extended by over a year at this time, provided I am measuring it by time in the traditional sense. But, there are so many other dimensions to living or being alive.
As Rent just did its final performance on Broadway, it surely has been a tribute to not only the writer/composer, Jonathan Larson (who unfortunately died of an undiagnosed aortic aneurysm the night before the show opened), but to all people who have faced the adversities of life. It is a challenge for those who have AIDS, as well as anyone who faces a life altering disease; to unravel how to survive. Finding the inspiration or motivation to pursue life can takes on a very different effort. It takes more than just going with the flow. It means taking the journey of life with a different set of “wheels”.
The basic principles of living are the same just as two different vehicles generally operate the same; but it is different. For me it has made the difference of life verses almost certain death. Living with LVAD has been an adjustment. Besides the daily routine stuff that has been added to my life, it is something that I am always and constantly aware of. Feeling it beat in my chest far harder than my own heart ever beat. Listening to the wispy sound it makes through the exit tube filter outside my abdomen also serves as a constant reminder as well. Some find the sounds soothing and serve to remind them that they are alive. I guess that also could be said of the heart rate monitor when you are in the hospital. At times it still seems to be somewhat of an intrusion.
There will never be the quiet of the night or the golden silence achieved during in meditation. One’s mind or my mind anyway, is always running in a dual modality. One is whatever I might normally be thinking about. But the second is listening to the various sounds associated with the LVAD. Do they all seem normal? Is there any irregularity that I should be noticing? Should I be anxious, or can I relax that all is indeed OK and the LVAD will continue doing the job it supposed to.
“Can I get on a ladder to change a light bulb?”
“Is it OK to do this when I am alone?”
“Do I have sufficient batteries for the activity or trip I am about to take? How long will I be gone? What chance is there that my trip my take longer than planned?”
“Will the battery alarm go off at an inconvenient time (like at the movies, or in a theatre, or the symphony hall?” I have been chastised for the noise it makes even without the battery alarm! It does make me think twice about some things, but then I don’t want to give up these activities either.
A lot of the time I can shut this out, but those thoughts always seem to be running through the back of my mind. I will admit I do spend a lot of time at home. Sometimes it is just because it is easier or finances are tight. Other times I do want to get out but can’t decide what to do or don’t want to do it by myself. I guess there are lots of things I could do.
I could shop, but I don’t particularly like to just shop around unless there is something I need. Even when there is something I need, often times it is something I can get on the internet just as easily, at a better price, and not have to waste the gas.
Well I won’t bore you with my dribble any longer; I actually have a date for lunch. I am actually getting out of the house for awhile! It will be so nice.
So on to my journey of life,
Namasté
Monday, September 1, 2008
A Life Without Love Is Like a Year Without Summer
A life without love is like a year without summer.
Swedish Proverb quotes
This entry I dedicate to my lover of 17 years, Don.
Don, I love you dearly! (And thank you for the roses, they are beautiful).
Yesterday we celebrated our 17th anniversary. Just an ordinary day other than the AC compressor was out and it is 95 here in the valley of North LA. The heat sort of lent itself to a lazy day. It is funny how my LVAD anniversary is one day prior. So we got to celebrate two anniversaries this weekend. We didn’t do anything special as Don is working hard getting ready for the start of school.
It has been an interesting year especially since it includes my recovery from open heart implant surgery. The scar actually healed up quite nicely, you don’t see it unless you are looking for it. The scar from my central is actually more noticeable, I suppose it wouldn’t have been so if I hadn’t tried to pull it out a couple of times. To be honest, I don’t remember our anniversary last year. In fact, I remember little to nothing of the two months following the LVAD implantation. I know I was released from the hospital on October 17th. There are a few moments of my physical therapy, training on the management and care of the LVAD, and sterile dressing procedures. I am told I wouldn’t want to remember more as I actually was a pretty nasty patient for awhile. I hate hearing that, but not much I can do about it. I go to the hospital frequently and see them and they are just happy to see I have recovered so well.
The one thing I remember of the days I can remember, my partner Don was there every night. In fact he was there every single night I was in the hospital and all day many times (as was my sister while she was here). That is a lot of commitment as school was to start in a couple of days (he teaches 3rd grade), and we had a new puppy to be taken care of as well. What can I say but that he was terrific and I am so happy to have him in my life. I probably would not be here if he wasn’t.
A week or so prior to my surgery, we had gone to Las Vegas for a short get away. On the way back he could tell things were not right. My energy level was non-existent, I didn’t even gamble (this normally would be totally unheard of), and I was always short of breath. By the time we got home, he had made all the calls necessary to obtain the referrals necessary and appointments made as I drove. I had not even asked him to, I probably even had said “oh nothing is wrong; I am fine, just not sleeping well”. Boy, how much denial could I be in! I ended up not even making to my first doctor’s appointment before he felt he had to rush me to the emergency room. The rest is history.
So thanks to him and the cardiac surgical team for the LVAD, I am still here; alive, well, and back to trying to figure out life. I don’t take each day for granted or casually; but I do not pursue them very aggressively either. I feel like I am back to not knowing what I want to be when I grow up, especially not knowing how long I have to do it.
I guess that is where I get stuck. Not that any of us really knows how long we have; I only know that odds are, “statistically”, it is less. But how much time is an unknown that is lesser than another unknown? As far as studies go, every year is a milestone, but only the first 2 years have been studied. I am doing well; I am in good health considering; but not sufficient to return to work full time. I did a 3 hour lecture on Saturday and was just exhausted afterwards. I will admit it does not take a whole lot to get me tuckered.
I would like to do more with my partner, but that is a little awkward as he will not be retiring for 6 more years and being a school teacher is a demanding job. I do sometimes assist with special classroom projects, but wish I was doing more. I sort of feel that like of rambled in this entry today, and that I am spending my life rambling.
Well I am going to bring this to a close. I thank you Don for caring and loving me, even when I couldn’t reciprocate with my love to you. I love you dearly and appreciate every little thing (and the big things too) that you have done for me.
Namaste
Swedish Proverb quotes
This entry I dedicate to my lover of 17 years, Don.
Don, I love you dearly! (And thank you for the roses, they are beautiful).
Yesterday we celebrated our 17th anniversary. Just an ordinary day other than the AC compressor was out and it is 95 here in the valley of North LA. The heat sort of lent itself to a lazy day. It is funny how my LVAD anniversary is one day prior. So we got to celebrate two anniversaries this weekend. We didn’t do anything special as Don is working hard getting ready for the start of school.
It has been an interesting year especially since it includes my recovery from open heart implant surgery. The scar actually healed up quite nicely, you don’t see it unless you are looking for it. The scar from my central is actually more noticeable, I suppose it wouldn’t have been so if I hadn’t tried to pull it out a couple of times. To be honest, I don’t remember our anniversary last year. In fact, I remember little to nothing of the two months following the LVAD implantation. I know I was released from the hospital on October 17th. There are a few moments of my physical therapy, training on the management and care of the LVAD, and sterile dressing procedures. I am told I wouldn’t want to remember more as I actually was a pretty nasty patient for awhile. I hate hearing that, but not much I can do about it. I go to the hospital frequently and see them and they are just happy to see I have recovered so well.
The one thing I remember of the days I can remember, my partner Don was there every night. In fact he was there every single night I was in the hospital and all day many times (as was my sister while she was here). That is a lot of commitment as school was to start in a couple of days (he teaches 3rd grade), and we had a new puppy to be taken care of as well. What can I say but that he was terrific and I am so happy to have him in my life. I probably would not be here if he wasn’t.
A week or so prior to my surgery, we had gone to Las Vegas for a short get away. On the way back he could tell things were not right. My energy level was non-existent, I didn’t even gamble (this normally would be totally unheard of), and I was always short of breath. By the time we got home, he had made all the calls necessary to obtain the referrals necessary and appointments made as I drove. I had not even asked him to, I probably even had said “oh nothing is wrong; I am fine, just not sleeping well”. Boy, how much denial could I be in! I ended up not even making to my first doctor’s appointment before he felt he had to rush me to the emergency room. The rest is history.
So thanks to him and the cardiac surgical team for the LVAD, I am still here; alive, well, and back to trying to figure out life. I don’t take each day for granted or casually; but I do not pursue them very aggressively either. I feel like I am back to not knowing what I want to be when I grow up, especially not knowing how long I have to do it.
I guess that is where I get stuck. Not that any of us really knows how long we have; I only know that odds are, “statistically”, it is less. But how much time is an unknown that is lesser than another unknown? As far as studies go, every year is a milestone, but only the first 2 years have been studied. I am doing well; I am in good health considering; but not sufficient to return to work full time. I did a 3 hour lecture on Saturday and was just exhausted afterwards. I will admit it does not take a whole lot to get me tuckered.
I would like to do more with my partner, but that is a little awkward as he will not be retiring for 6 more years and being a school teacher is a demanding job. I do sometimes assist with special classroom projects, but wish I was doing more. I sort of feel that like of rambled in this entry today, and that I am spending my life rambling.
Well I am going to bring this to a close. I thank you Don for caring and loving me, even when I couldn’t reciprocate with my love to you. I love you dearly and appreciate every little thing (and the big things too) that you have done for me.
Namaste
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