This will be a toughie. It does involve going to see my spouse’s (domestic partner’s) family and all families do have their challenges. Tensions are high on my part as the outsider. I have known some for pretty much the entire time of our relationship (17 years this coming August 31), but at times I still feel like the 5th wheel.
Well back to the flying part, it will be interesting. I have flown many times over the years, many years I enjoyed have gold level membership with the (then)easy perks of a frequent flyer. I remember my first flight out of Shreveport, LA to Baton Rouge. It was a DC-7 or 8 then, early morning flight around 6:00 a.m. It was pouring down rain when we ran out on the tarmac to board the play (sorry no jet ways then), and it took off in the middle of thunderstorm. Nothing like today when a drop of rain will frequently bring operations to a screeching halt. But very little is ever as easy as it used to be. Now, for the flying itself, it is the easy part. I don’t anticipate any problems with my device (LVAD) during flight. Just keep a couple fresh sets of batteries around and I will be OK.
Fortunately airlines do not have a carry on limit for persons handicapped and/or with medical conditions as long as their Dr. deems the patient/passenger of sufficient health to make the trip and verifies attended equipment as required. I have quite a boat load of gear to take along on board as I can’t check it assuming worst case scenarios. If a flight was to be canceled, or cut short and has to land short of the destination, this gear needs to be with me in case there is an unexpected night spent in the airport or a hotel. The list includes:
Physically Attached: I have a tube which protrudes from my belly connected to a filter for pump exhaust or air exchange); this is in turn connect to a controller which is like a small computer attached to my belt, The controller connects to a pair of batteries, each the size of a large laptop battery weighing several pounds a piece. A pair of batteries usually lasts 4 – 6 hours depending on the level of physical activity.
Close at hand: I also must carry at my immediate disposal (like in a fanny pack”); 2 to 4 batteries as replacements when needed, a spare controller and filters, emergency instruction cards, emergency manual pump which I can do or as I instruct someone else could do, emergency contact information.
Balance of gear to board: My prescriptions- about 26 in all (does include a couple of supplements), the remaining spare batteries (they total 12 between the pair on me, the two spare pairs in my fanny pack leaving 6 with the charger), a 24 hour emergency battery (sealed cell), 6 Battery charger/PBU (portable battery charging unit) which also includes an external display unit (LCD device), power cable, 18 ‘ power tether used for when I am sleeping, blood pressure cuff, pulse oxymeter and other misc. cables.
I have spoke with an airline reservation agent and manager and have been assured there would be no problem as long as it can be stowed overhead or under a seat. They referred me to TSA for further “assistance”. I contacted TSA’s 800 number and received a standardized message that required medical equipment that upon inspection at the airport security will be no problem as they have dealt with electric wheelchairs, breathing assist devices, oxygen tanks, etc. with no problem. Even insisting that I will have equipment totally foreign from what they have seen before (there are not that many of us with LVAD’s who have flown in order for them to have been exposed to what equipment I must carry with me when I fly or travel long distance). TSA has only provided the web site information and contact #’s where I could leave a message, none have been returned. I have even turned to the Travelers Aid staff at LAX, although very supportive; they were at a loss as what I should do. They did provide a local TSA number where I again had to leave a message, but I actual received a callback the next day. Person calling could not help directly, but did assist in me leaving a message for their manager or director at LAX. The next day the director herself called me back directly, reviewed my situation, google’ed my device while I was on the phone and understood exactly what I was referring to as required equipment. I gave her my flight schedule and she assured me they would be alerted of my requirements. She even provided me with the contact information for me to do the same in Columbus. It took a little persistence, but overall, I feel a little better that things might go reasonably well. I will keep you posted.
In preparation I will have a letter from my cardiothoracic surgeon and my general physician releasing me for air travel and verifying my required equipment. I have put together a cover letter summarizing all the components of the gear I will have with me and with references to the patient handbook (which also happens to be directly available from Thoratec’s website). I will all this and a copy of the patient handbook and a listing of my medications available for security. Hopefully I am as prepared as I can be.
If anybody out there who has had experience for this type of situation, I would love to hear from you……
ljbristow@gmail.com
I sure am glad I don’t have to do this every time I leave the house! J
I will keep you all posted as my travel preparations continue.
Have a great day!
Thursday, July 31, 2008
Monday, July 28, 2008
Do Hummingbirds Have Taste?
Hey, I am back......
First, a quick apology for not entering any updates over the last couple of weeks do to a combination of factors, first of which being that both my laptops crashed, and then the ensuing depression of coping with that in addition to my other challenges.
On to today’s entry:
I recently finished redoing my patio garden which included several additional humming bird feeders. Seeing or hearing them flit about gives me some sense of accomplishment in that I have managed to create something close to Mother Nature’s feeding ground on my tiny little patio. I have 5 different feeders from “el cheapo” to moderately expensive hand blown glass. Interestingly, they feed off of the cheapest and tackiest one of the bunch made from inexpensive colored plastic, the one most readily visible on the patio. I guess where this hit’s home for me is whether I am slowly settling into a rut of what is easiest and acceptably safe for me to do and go for the obvious-survival (to continue the humming bird metaphor by going for the almost vulgar cheap feeder); or am I going to find the initiative, energy, and determination to go beyond the mode of survival with an LVAD, AIDS, etc. and look for the treasures beyond just the physical necessities of life by doing my best to appreciate family, friends, to help others, appreciate what life has given and continues to give me. Return to doing things I have enjoyed in the past (as possible) and to explore new things that I now have time for.
In previous entries I have talked about wanting to push the line in the sand and exceed the boundaries of what is considered safe living with my medical issues. One of the challenges I have not discussed much is my battle with depression and how that has intensified with the added challenges. I have struggled with it off and on for most of my life. I could easily try to blame it on my childhood which was not exactly blissful with an alcoholic father who died when I was 13. We never had much as a result, but my mother some how managed to make do and we never did without the essentials of a roof over our heads and food on the table. I could place part of my emotional struggles on discovering I was gay at a time when it still was not very socially acceptable. I could begrudge a 30 year career of long hours, constant travel, hard work, and self sacrifice to only endure a slow accent on the corporate ladder. Blend that with the interspersed health issues that have lead me to where I am today. I know these circumstances really are not much different than those of many others; but there are times that these things do overwhelm me. Perhaps or maybe I have even feel I have been cheated out of some of what life has to offer.
True or not, these are some of the feelings that swirl around in my head. Some folks are able to forget and pretend these events never happened. Some folks just pack’em into neat little boxes in the back of their mind hoping to forget them, and sometimes they do successfully. Others of us seemingly cannot forget them, kind of like the burls and knots found in prized woods all safely enclosed within the rings of a tree’s life history. It is my job to find the right way (like an artest) to carve, polish, and resolve these challenges within the foundation of my life.
In some ways I would have thought going through the life I have had was a relatively normal existence. Even having AIDS has not been too big of a challenge as I have remained relatively asymptomatic. Even cardiomyopathy didn’t seem to be that big a deal until it came with heart failure. When time came that I needed a pacemaker, I still was pretty much OK in coping with it. When it came to my second heart failure and the ensuing implant of the LVAD, recovery became much more of a challenge: physically, mentally, and emotionally.
Mentally, I have virtually no memory of the implant decision, procedure, and for several weeks of the recovery. About 4 weeks after, there are a couple faint memories. It really wasn’t until the couple of weeks prior to my hospital release that I had very much recollection at all. Most of my recollections are from the last couple of weeks involving physical therapy, some mental exercises. Otherwise, most of my time was spent sleeping, napping, resting, watching a little TV and tried to do some reading. Focusing on anything for long periods of time was difficult. Even now it is still difficult to read for long periods of time, but that is better.
Physically it was almost like starting over again. Initially I was on a respirator for several weeks; (I understand they had a difficult time weaning me off the device). Once off of it, I remained pretty sedentary, probably and primarily due to medications to manage pain, heart and other physical activity, etc. From the time I do have recall; my appetite ran from nonexistent to nominal. (I had dropped from around 200 #’s a couple of months prior to surgery to 154#’at some point after surgery). I had to learn how to sit up, get out of bed and learn to walk all over again; unable to go to the bathroom unattended seemed so demeaning. I know I knew how to do these things, but to not be able to do them on my own at the time seemed unthinkable. All came in due time, I just wanted the timeline to move faster. I also still wanted to know that I could eventually return to doing physically what I could before. (Bodybuilding had become a significantly hobby for me and I didn’t and don’t want to think I can’t achieve the same results I had before.)
Just a short month away will be my one year anniversary of receiving the LVAD implant. I have come a long way physically, but not near what I was doing before. I am back up to 190-195 #’s. I have benched my body weight a couple of times. I can actually do sit-ups, pushups, and touch my toes. I have not worked as hard at this as I could, but I think I can still be proud with the progress I made.
Emotionally, there have been many ups and downs. Like some trees tend to have more burls than others, perhaps I have a few more challenges than others. Trees tend to live on in spite of the burls in their wood, and I want to find ways to live in spite of the challenges in mine. I now require more sleep, my stamina is less, hot weather is more exhausting, etc. Some activities are no longer an option, others require more preparation. I guess that last two are what I struggle with most. Although not specifically emotional, they tie to my emotional state. I don’t handle no very well or that life requires more from me to do certain things. I almost feel picked on. I don’t like having the negative feeling, but I don’t deny that they exist.
I know many people have far greater challenges to living than I do, but mine are the challenges that face me. I sometimes feel very alone in facing them even though I do have quite a few folks who try to support me. I will continue my med’s and therapy in hopes that I can get a handle on these challenges and the impact they have on me, not just physically-but emotionally as well. So back to the humming bird metaphor, perhaps I need to take a break and be content awhile until I can regain the strength to once again push the line.
Namasté
Josh
First, a quick apology for not entering any updates over the last couple of weeks do to a combination of factors, first of which being that both my laptops crashed, and then the ensuing depression of coping with that in addition to my other challenges.
On to today’s entry:
I recently finished redoing my patio garden which included several additional humming bird feeders. Seeing or hearing them flit about gives me some sense of accomplishment in that I have managed to create something close to Mother Nature’s feeding ground on my tiny little patio. I have 5 different feeders from “el cheapo” to moderately expensive hand blown glass. Interestingly, they feed off of the cheapest and tackiest one of the bunch made from inexpensive colored plastic, the one most readily visible on the patio. I guess where this hit’s home for me is whether I am slowly settling into a rut of what is easiest and acceptably safe for me to do and go for the obvious-survival (to continue the humming bird metaphor by going for the almost vulgar cheap feeder); or am I going to find the initiative, energy, and determination to go beyond the mode of survival with an LVAD, AIDS, etc. and look for the treasures beyond just the physical necessities of life by doing my best to appreciate family, friends, to help others, appreciate what life has given and continues to give me. Return to doing things I have enjoyed in the past (as possible) and to explore new things that I now have time for.
In previous entries I have talked about wanting to push the line in the sand and exceed the boundaries of what is considered safe living with my medical issues. One of the challenges I have not discussed much is my battle with depression and how that has intensified with the added challenges. I have struggled with it off and on for most of my life. I could easily try to blame it on my childhood which was not exactly blissful with an alcoholic father who died when I was 13. We never had much as a result, but my mother some how managed to make do and we never did without the essentials of a roof over our heads and food on the table. I could place part of my emotional struggles on discovering I was gay at a time when it still was not very socially acceptable. I could begrudge a 30 year career of long hours, constant travel, hard work, and self sacrifice to only endure a slow accent on the corporate ladder. Blend that with the interspersed health issues that have lead me to where I am today. I know these circumstances really are not much different than those of many others; but there are times that these things do overwhelm me. Perhaps or maybe I have even feel I have been cheated out of some of what life has to offer.
True or not, these are some of the feelings that swirl around in my head. Some folks are able to forget and pretend these events never happened. Some folks just pack’em into neat little boxes in the back of their mind hoping to forget them, and sometimes they do successfully. Others of us seemingly cannot forget them, kind of like the burls and knots found in prized woods all safely enclosed within the rings of a tree’s life history. It is my job to find the right way (like an artest) to carve, polish, and resolve these challenges within the foundation of my life.
In some ways I would have thought going through the life I have had was a relatively normal existence. Even having AIDS has not been too big of a challenge as I have remained relatively asymptomatic. Even cardiomyopathy didn’t seem to be that big a deal until it came with heart failure. When time came that I needed a pacemaker, I still was pretty much OK in coping with it. When it came to my second heart failure and the ensuing implant of the LVAD, recovery became much more of a challenge: physically, mentally, and emotionally.
Mentally, I have virtually no memory of the implant decision, procedure, and for several weeks of the recovery. About 4 weeks after, there are a couple faint memories. It really wasn’t until the couple of weeks prior to my hospital release that I had very much recollection at all. Most of my recollections are from the last couple of weeks involving physical therapy, some mental exercises. Otherwise, most of my time was spent sleeping, napping, resting, watching a little TV and tried to do some reading. Focusing on anything for long periods of time was difficult. Even now it is still difficult to read for long periods of time, but that is better.
Physically it was almost like starting over again. Initially I was on a respirator for several weeks; (I understand they had a difficult time weaning me off the device). Once off of it, I remained pretty sedentary, probably and primarily due to medications to manage pain, heart and other physical activity, etc. From the time I do have recall; my appetite ran from nonexistent to nominal. (I had dropped from around 200 #’s a couple of months prior to surgery to 154#’at some point after surgery). I had to learn how to sit up, get out of bed and learn to walk all over again; unable to go to the bathroom unattended seemed so demeaning. I know I knew how to do these things, but to not be able to do them on my own at the time seemed unthinkable. All came in due time, I just wanted the timeline to move faster. I also still wanted to know that I could eventually return to doing physically what I could before. (Bodybuilding had become a significantly hobby for me and I didn’t and don’t want to think I can’t achieve the same results I had before.)
Just a short month away will be my one year anniversary of receiving the LVAD implant. I have come a long way physically, but not near what I was doing before. I am back up to 190-195 #’s. I have benched my body weight a couple of times. I can actually do sit-ups, pushups, and touch my toes. I have not worked as hard at this as I could, but I think I can still be proud with the progress I made.
Emotionally, there have been many ups and downs. Like some trees tend to have more burls than others, perhaps I have a few more challenges than others. Trees tend to live on in spite of the burls in their wood, and I want to find ways to live in spite of the challenges in mine. I now require more sleep, my stamina is less, hot weather is more exhausting, etc. Some activities are no longer an option, others require more preparation. I guess that last two are what I struggle with most. Although not specifically emotional, they tie to my emotional state. I don’t handle no very well or that life requires more from me to do certain things. I almost feel picked on. I don’t like having the negative feeling, but I don’t deny that they exist.
I know many people have far greater challenges to living than I do, but mine are the challenges that face me. I sometimes feel very alone in facing them even though I do have quite a few folks who try to support me. I will continue my med’s and therapy in hopes that I can get a handle on these challenges and the impact they have on me, not just physically-but emotionally as well. So back to the humming bird metaphor, perhaps I need to take a break and be content awhile until I can regain the strength to once again push the line.
Namasté
Josh
Monday, July 14, 2008
Exercise with an LVAD – Are You Nuts?
Exercise – (wikipedia- http://en.wikipedia.org) “physical exercise is any bodily activity that enhances or maintains physical fitness and overall health. It is often practiced to strengthen muscles and the cardiovascular system, and to hone athletic skills. Frequent and regular physical exercise boosts the immune system, and helps prevent diseases of affluence such as heart disease, cardiovascular disease, Type 2 diabetes and obesity. It also improves mental health and helps prevent depression.
20 years ago, I would not have said I did it for all the above reasons, but I did workout as regular as possible (cardio and weight lifting). Today I do workout for most of those reasons. In order for me to gain more normalcy in my life, I wanted to get back in shape as much as possible. There was a time I weighed a 210-215 muscular 6’ body. I was rather proud of myself at that time (just a short 5 years ago). I could bench press 300, leg press 900, and so on. I thought I was rather a “beef cake”, but little did I know of my future.
Through a series of bouts of pneumonia, heart failure, and the normal progression of AIDS; I ended up at a wiry 154 #’s at the time of my implant on August 30th, 2007. Staff members were worried if I was even large enough for the device. I had a longer hospital stay than most. I was in cardiac ICU for about 5-6 weeks and another 2 weeks or so in the cardiac wing. I got to finally check out October 17th. I left the hospital weighing around 160 or there about if I remember correctly. Of course take away the weight of the LVAD and I still would have weighed only around 154 #’s. In spite of the tremendous care I received at Cedars Sinai, going home felt like I had been freed. In the hospital there were always tests to be run, IV’s running, physical and occupational therapy-pushing me and yet holding me back least I overextend myself. Regardless, I was finally home and was generally happy for that.
Continued care at home included various home health care assistance, nurse visits, physical therapy and occupational therapist at home. I was lucky to have been able to have the best of care and encouragement that things would get easier, and they did.
Initially I met with my LVAD coordinator and cardiothoracic surgeon 3 times a week, depending on family and friends for transportation to and from. It was a busy schedule between doctors/hospital visits and my home health care visits. I couldn’t be released to drive until my sternum healed, mine took around 3 months. I think this is usually around 6 to 8 weeks for most folks. It was early December before I was released to drive and was my first major milestone (to me) in my recover. I now had some independence. The only negative is seat belts and airbags will always pose a risk for me if there is an accident. Knock on wood, I have not had one in 15 years.
Even with my therapy, I was slow to gain weight. With the implant, my appetite was minimal and when I did eat, it did not take much to feel full. This was a challenge as I really needed to put some weight on. With the majority of folks in our country being overweight, I guess I was in a somewhat enviable position. I could eat just about anything I wanted; I just could not get very much of it down without feeling absolutely stuffed and miserable. This has improved somewhat over time; I still cannot eat a large meal, but I know how to manage more effectively what, how, and when I eat. When we go out, give me an appetizer and dessert and I will have had “sufficient”. I guess you could say I am a cheap date!
I pressed my doctors about working out or other exercises; reluctantly they conceded I could, but proceed with caution. Well I assume that my definition of caution and theirs is probably a little different. I think it was partly due to not knowing what an LVAD recipient could expect to achieve, but then they almost always take a conservative approach and try to avoid any activity that might be viewed as risky. In January, 2008 I started working out at home with light weights and a stationary bike I had rigged up with my own bike. I reached the point, that I actually started riding my bike in the neighborhood. Nothing real speedy or long, but I could go 3 or 4 miles on flat land. My doctors were absolutely amazed (but then so was I!). Being a bit of a geek, I found practically nothing on the internet involving recovery from a personal perspective, much less LVAD, recovery, and exercise. What could I expect, how I should do it, what do I monitor to make sure I don’t over do it and yet make progress (and measure it). So I was thrilled and began wondering what I could do if I tried hard enough.
I felt pretty knowledgeable about exercise, form, breathing and a strong awareness of my physical self that I felt capable of being able to move forward carefully in training at the gym. Late January, the cardiologist gave me a release for the gym. I thought to myself, I can’t believe it. I knew I was pushing the line in the sand and that there were risks. At the same time, I felt what is the use of being alive, if I can’t live in it? This by no means makes less of life for those with more limiting disabilities; but I still had a fully functional body, just a compromised heart which is supposed to be compensated for with the LVAD! Therefore I should still be able to use the rest of my body as before (well almost). So there I go trailblazing at the gym.
I did find CardiacAthletes.com (there is a link in the right side bar), it is a website designed to be a source of information as well as provide an arena for people who have had cardiac issues and pursued their sports interest(s) in spite of what would sideline most people. They given me tremendous support and encouragement and the accomplishments by some are absolutely amazing. (Like getting out of the hospital from open heart surgery in three days? WOW!) So I really began believing I could return to lifting weights, maybe not quite as much weight as before, but I sure could work towards it. It will just be a little slower process than before. As much as I want to see instant results, I know that is not a reasonable expectation.
I started by maintaining a work out journal. I worked with my cardiologist on what measurable limits I should stay with in (for heart rate, blood pressure, O2 saturation, etc.). Initially it was with very light weights, high reps, and only a couple exercises at first. Since I was logging all my workout data, it made it a little easier to see my progress and not try to compare it to what I remember doing at some of my earlier exercise peaks, but to what I am accomplishing now. I am not the same person I used to be, so I can’t expect the same kind of results. BUT, I was making improvements.
I now can do the treadmill for an hour @ a 7% grade and average about 3 miles per hour. I also am up to a one rep max on the flat bench of 210, and shoulder press of 140, and leg press of 550. Not near what I “used to” nor would it win any competition, but it has won the competition with me. I don’t know how far I can go, but I am going to keep pushing.
I really don’t know how far I can go with this, other than it does make me feel better about myself. Being in better physical condition should make for a speedier recovery with my next open heart surgery (when they replace the current one. I am not sure what else I might try in the exercise arena, but something I have also wanted to do is ride the California Aids ride from San Francisco to Los Angeles. It is probably unrealistic to think I will actually be able to ride the entire route, but I have done my research on it. It seems they have it very well organized, if I or someone else to far behind the “pac”, then they will just give you a lift back to the middle of the “pac”. The medical support and over all trip support has matured to accommodate those who may not be able to make the entire trip due to personal limitations (persons with AIDS I think was the original motivation behind this. My sister, Karen has also offered to come out and be my “mule”. Anyway it is something I always wanted to do, and perhaps I may still get to.
Have a GREAT DAY!
Josh
Do not question or regret the past as it cannot be changed. Strive for the moment and all that it can be as the journey does continue. –jb
...Today is a gift, that's why they call it the present! -Babatunde Olatunji
20 years ago, I would not have said I did it for all the above reasons, but I did workout as regular as possible (cardio and weight lifting). Today I do workout for most of those reasons. In order for me to gain more normalcy in my life, I wanted to get back in shape as much as possible. There was a time I weighed a 210-215 muscular 6’ body. I was rather proud of myself at that time (just a short 5 years ago). I could bench press 300, leg press 900, and so on. I thought I was rather a “beef cake”, but little did I know of my future.
Through a series of bouts of pneumonia, heart failure, and the normal progression of AIDS; I ended up at a wiry 154 #’s at the time of my implant on August 30th, 2007. Staff members were worried if I was even large enough for the device. I had a longer hospital stay than most. I was in cardiac ICU for about 5-6 weeks and another 2 weeks or so in the cardiac wing. I got to finally check out October 17th. I left the hospital weighing around 160 or there about if I remember correctly. Of course take away the weight of the LVAD and I still would have weighed only around 154 #’s. In spite of the tremendous care I received at Cedars Sinai, going home felt like I had been freed. In the hospital there were always tests to be run, IV’s running, physical and occupational therapy-pushing me and yet holding me back least I overextend myself. Regardless, I was finally home and was generally happy for that.
Continued care at home included various home health care assistance, nurse visits, physical therapy and occupational therapist at home. I was lucky to have been able to have the best of care and encouragement that things would get easier, and they did.
Initially I met with my LVAD coordinator and cardiothoracic surgeon 3 times a week, depending on family and friends for transportation to and from. It was a busy schedule between doctors/hospital visits and my home health care visits. I couldn’t be released to drive until my sternum healed, mine took around 3 months. I think this is usually around 6 to 8 weeks for most folks. It was early December before I was released to drive and was my first major milestone (to me) in my recover. I now had some independence. The only negative is seat belts and airbags will always pose a risk for me if there is an accident. Knock on wood, I have not had one in 15 years.
Even with my therapy, I was slow to gain weight. With the implant, my appetite was minimal and when I did eat, it did not take much to feel full. This was a challenge as I really needed to put some weight on. With the majority of folks in our country being overweight, I guess I was in a somewhat enviable position. I could eat just about anything I wanted; I just could not get very much of it down without feeling absolutely stuffed and miserable. This has improved somewhat over time; I still cannot eat a large meal, but I know how to manage more effectively what, how, and when I eat. When we go out, give me an appetizer and dessert and I will have had “sufficient”. I guess you could say I am a cheap date!
I pressed my doctors about working out or other exercises; reluctantly they conceded I could, but proceed with caution. Well I assume that my definition of caution and theirs is probably a little different. I think it was partly due to not knowing what an LVAD recipient could expect to achieve, but then they almost always take a conservative approach and try to avoid any activity that might be viewed as risky. In January, 2008 I started working out at home with light weights and a stationary bike I had rigged up with my own bike. I reached the point, that I actually started riding my bike in the neighborhood. Nothing real speedy or long, but I could go 3 or 4 miles on flat land. My doctors were absolutely amazed (but then so was I!). Being a bit of a geek, I found practically nothing on the internet involving recovery from a personal perspective, much less LVAD, recovery, and exercise. What could I expect, how I should do it, what do I monitor to make sure I don’t over do it and yet make progress (and measure it). So I was thrilled and began wondering what I could do if I tried hard enough.
I felt pretty knowledgeable about exercise, form, breathing and a strong awareness of my physical self that I felt capable of being able to move forward carefully in training at the gym. Late January, the cardiologist gave me a release for the gym. I thought to myself, I can’t believe it. I knew I was pushing the line in the sand and that there were risks. At the same time, I felt what is the use of being alive, if I can’t live in it? This by no means makes less of life for those with more limiting disabilities; but I still had a fully functional body, just a compromised heart which is supposed to be compensated for with the LVAD! Therefore I should still be able to use the rest of my body as before (well almost). So there I go trailblazing at the gym.
I did find CardiacAthletes.com (there is a link in the right side bar), it is a website designed to be a source of information as well as provide an arena for people who have had cardiac issues and pursued their sports interest(s) in spite of what would sideline most people. They given me tremendous support and encouragement and the accomplishments by some are absolutely amazing. (Like getting out of the hospital from open heart surgery in three days? WOW!) So I really began believing I could return to lifting weights, maybe not quite as much weight as before, but I sure could work towards it. It will just be a little slower process than before. As much as I want to see instant results, I know that is not a reasonable expectation.
I started by maintaining a work out journal. I worked with my cardiologist on what measurable limits I should stay with in (for heart rate, blood pressure, O2 saturation, etc.). Initially it was with very light weights, high reps, and only a couple exercises at first. Since I was logging all my workout data, it made it a little easier to see my progress and not try to compare it to what I remember doing at some of my earlier exercise peaks, but to what I am accomplishing now. I am not the same person I used to be, so I can’t expect the same kind of results. BUT, I was making improvements.
I now can do the treadmill for an hour @ a 7% grade and average about 3 miles per hour. I also am up to a one rep max on the flat bench of 210, and shoulder press of 140, and leg press of 550. Not near what I “used to” nor would it win any competition, but it has won the competition with me. I don’t know how far I can go, but I am going to keep pushing.
I really don’t know how far I can go with this, other than it does make me feel better about myself. Being in better physical condition should make for a speedier recovery with my next open heart surgery (when they replace the current one. I am not sure what else I might try in the exercise arena, but something I have also wanted to do is ride the California Aids ride from San Francisco to Los Angeles. It is probably unrealistic to think I will actually be able to ride the entire route, but I have done my research on it. It seems they have it very well organized, if I or someone else to far behind the “pac”, then they will just give you a lift back to the middle of the “pac”. The medical support and over all trip support has matured to accommodate those who may not be able to make the entire trip due to personal limitations (persons with AIDS I think was the original motivation behind this. My sister, Karen has also offered to come out and be my “mule”. Anyway it is something I always wanted to do, and perhaps I may still get to.
Have a GREAT DAY!
Josh
Do not question or regret the past as it cannot be changed. Strive for the moment and all that it can be as the journey does continue. –jb
...Today is a gift, that's why they call it the present! -Babatunde Olatunji
Sunday, July 6, 2008
So What Is A Typical Normalized Day With LVAD?
So What Is A Typical Normalized Day With LVAD?
I hope my candor in this entry will be taken as just that and nothing more. I am thrilled to be here and to be alive, but there are times or days when that feeling can be difficult to connect with. I am happy to say I have had my LVAD for 10+ months and am going strong and probably better than average. I am on LTD disability and do not anticipate returning to work. I don’t believe I can do so without putting my well being in further jeopardy. The LVAD does require a number of daily chores and maintenance activities. They are not horrific by any means, but can be lot for someone to perform depending on their health or caregiver availability. I am lucky to have my partner Don who has been a wonderful and willing caregiver while I recovered to total self sufficiency. I am able to run errands, shop, do most average cleaning tasks. Extended physical exertion and exposure to heat and/or sun does wear me down quickly. So I can’t do a theme park from sunrise to past sunset, but I am OK with that, I just have to do things in measured doses so to speak.
Anyway, the day starts like most everyone’s, just a few extra chores to get started. For me it starts with who is going to make the coffee! Fortunately my partner takes care of that on most days. If I do it, I have to get semi-dressed, unhook from the tether to my portable battery charger unit (PBU) and connect to two batteries, each about the size and weight of an old laptop battery. The tether or the two batteries connect via a controller box just under 4 inches square and about 1 inch thick. The controller can clip on a belt, a pocket, or a waist band, etc. The batteries must be carried via a pouch, a special belt, or harness. So there is a little more to getting dressed than usual.
A physical challenge is what or where to but the batteries as they and their connecting holster as they are a bit clunky. I think sometimes I also have a mental block dealing with disconnecting and going on batteries, I guess it as just a different dimension of: “I have to get out of bed in the morning…I have to put on my batteries…..so I can make the coffee …and go out and get the paper….”. Anyway, the manufacturer’s harness is not particularly user friendly and I don’t care for it (I don’t know anyone who does). So I have gotten very creative, I wear cargo shorts or pants most of the time. They can be purchased inexpensively at an army/navy surplus type store, or high end fashion at your favorite clothing store depending on your liking (or pocketbook). The side pockets are in just the right location for both batteries and their respective cable length. Since I don’t have much of a butt in spite of working out, biking, etc.(AND NO I WON’T GET BUTT IMPLANTS, I may live in LA, but I have not lost all self respect), a belt usually is not enough to manage my pants + the weight of the batteries; therefore, I wear suspenders most of the time. I have cloth, leather, and chainmail suspenders; something for almost every occasion. So I have come up with a variety of options so as to not feel too limited. The need to accommodate the batteries and controller holds true for the remainder of the day.
I have tried to turn the battery frustration into an opportunity as a friend who is a leather smith is helping me design a couple of alternate belts/ harnesses for coping with wearing the batteries. Having survived major back surgery himself with a body cast, etc.; he understands how the little things can improve the quality of life. This could be a minor business opportunity, I will have too wait and see.
There are other tasks associated with my LVAD, THEY are not major but essential. I must maintain a log of blood pressure, pulse, temperature, and weight (gains or losses of just a few pounds can be a good indicator of a potential health issue). In addition to these relatively normal measurements, I must also log the Rate, Volume, and Flow from my PBU (portable battery charging unit) before disconnecting from its tether to the batteries.
· RATE, this is sort of like my pulse or heartbeat, but rather than my own, it is the LVAD’s Rate. The LVAD has two options it may operate at: Fixed Rate and Auto Rate. Fixed Rate is usually set at a default of 50 and is considered to be an energy saving pace. Auto Rate is set up to respond according to my own body’s demand on the heart. The greater the exertion, the higher the rate, kind of like your native heart. It does have a maximum of 120 bpm (beats per minute).
· VOLUME, expressed in millimeters (ml) per beat (or stroke). This can vary significantly; mine has run from 45 to 85 mls, but 60 to 80 is probably more like the desired range).
· FLOW, expressed as liters per minute, has a typical range of 4 to 10 liters per minute (for the LVAD). A heart in complete failure would have close to a 0 liter flow. (I won’t live long like that). The minimum at rest what I have read is around 4.2. Again, the greater the demand on the heart, the higher the liters per minute blood flow must be to meet the demands of your body.
There are a large number of factors which can affect the output of your heart and your LVAD, but that will have to be the subject of another blog entry.
Other normal morning routines are not out of the ordinary, brush your teeth, shave, wash your face, etc. Most of us also like to include a daily, if not more often shower. One can still take a shower when over they want, but the days of the minute in and out shower are gone, at least for now. Since I am all wired up either to direct power or batteries, it is an entirely different procedure now. One certainly can not do it when directly hooked up to the live power of the PBU; you must be hooked up to your batteries. They have a special shower kit in which you hook up your vent/power hose and insert your electric controller and batteries. It then hangs upside with the opening down so to protect from water in the shower (from your shoulder). The next step I take is I do place a plastic wrap covering over the open wound dressing to minimize how wet it gets.
The taking of a shower itself can only be performed with a hand held shower device. I do perform mine standing, but most I believe take it sitting on a bathing stool. Basically you bath one portion of your body at a time taking care to avoid getting your dressing wet. This is particularly crucial until the “open wound has healed” to its maximum potential. I say maximum potential, because it is a continual process; somewhat like your fingernails, the wound is always healing and as such is my most vulnerable place for infection.
If one chooses not to shower, there is always the sponge bath method, or a combination of the two. Personally I do miss the quickie shower. Now I usually opt out for the sponge bath as it is less complicated than the new shower routine.
After the bathing (or anytime I become exceptionally sweaty), there is one more chore: changing the dressing over the exit tube using “sterile procedure” or at least almost sterile. At home it really is practically impossible to truly use sterile procedure, but I do try to come as close as possible. I won’t go into full detail, but you have this tube coming out of your gut that your skin has grown attached (or in the process). Currently there is only one recommended antibacterial cleaning pad recommended as it has no residue (essential for this kind of wound). I then cover it with sterile dressing, tape things up, and then put on a support belt that helps hold the exit tube in place. I call it my LVAD corset. It really doesn’t do anything for the “spare tire”, but it does keep the exit tube in place, and is my newest required component when dressing.
The rest of the day is near normal. Some of the variations from I would have considered a normal day as well as some of the activities I can perform are:
...I do struggle with depression and anxiety associated with my various health maladies. As my health in general has improved, so have these conditions. These issues are very common during pre-diagnoses of my other health issues, and for different reasons will always be a part of the recovery.
...I am more sensitive to cold and heat (heat in particular)
...Dietary habits have changed as I no longer can eat a big meal, instead I must eat smaller meals and more of them. Hey, this is recommended anyway right? I just happen to have an LVAD that takes up half my stomach and forces me to adhere to that practice.
...Fortunately I can eat most anything I want, I have no cholesterol issues, blood pressure, etc.; although they do encourage me to not over indulge on anything with sodium or caffeine, and eat a potassium rich diet. I usually do not eat a lot of fat or sugar calories either.
...I manage demands on my energies so I can get through the day. Afternoon naps are not uncommon.
...I require more sleep, or perhaps I have become more aware of what my sleep needs really are. When I was a workaholic, 4 hours (and a few all nighters) were common. Now I really must have between 8 and 10 hours sleep.
...My activities are not be as vigorous as before, but I do live a fully active life.
...High impact activities are NOT recommended, i.e. running, jumping, wrestling, falling, etc.
...I do work out and do low impact cardio on a regular basis, (including riding my bike when I choose). There are considerations one must keep in mind, but that again will be another blog entry.
...I can prepare and cleanup from my own meals, do moderate housework, work in the patio garden for short periods of time.
I can shop, go to the movies, attend the local farmers market, or go for a walk in the neighborhood.
...I do web surf, watch TV, read and write a lot. Admittedly these are easier activities, but choose not to be restricted to these activities.
...I do see more than my fair share of doctors, requisite lab works etc.
...OH and there is SEX J, after appropriate recovery, YES one can have SEX! (or intimacy as stated in the manual)
So much of life after LVAD can be near normal. There is one more component I must keep in mind is what do I do when I leave the security of home and being close to my PBU? Long distance travel I will cover later, but for daily outings, there is a little planning required. Yes, I can drive, ride a bike, and this fall I plan to get a motorcycle again (a Harley I hope). But, I must plan my battery usage, portable emergency gear. I wear two dog tags that show that I am an LVAD patient and that I have a pacemaker. I also include ALL my medications between the 2 tags. I probably have a longer list than most (20+) due to the multiple conditions I have. Then there is my emergency bag…..
It is not too conspicuous, about the size of a large “fanny pack”. In it I carry at least 2 spare pairs of batteries, a spare controller with cables, replacement vent filters, a manual or hand pump (with instruction card) for the LVAD, another copy of my medication list, my emergency contacts, and my cell phone. So it’s not all that bad. The batteries typically last 4-5 hours, this will depend on the actual demand or activity. I have taken 3 pairs a couple of times, but it is rare that I am away from home that long. I tease people and say I can jump start their car or keep their laptop running longer than their battery!
In the beginning of recovery, it did seem like an awful lot to do. There are times even now that it overwhelms me. However, the alternative is I would not be here. I know I don’t have the worst challenges in the physical life as there are many with greater challenges than myself. They often handle it with what seems to be with effortless zeal for life. Of them I stand in awe.
It is like an actor who personifies a character in a movie with the greatest ease…what we don’t see is the preparation performed by the actor to achieve his performance. I think the same is true for us with different disabilities; it was a journey to get where we are at the present, the difference is our journey continues.
If you have an LVAD or it has been recommended as a treatment, please drop me a line, I will be happy to share my experiences that I may not have yet been shared on the blog. There are not many of us (yet), and we (and our caregivers) need to share and support each other.
More to Come,
Josh
Do not question or regret the past as it cannot be changed. Strive for the moment and all that it can be as the journey does continue. –jb
...Today is a gift, that's why they call it the present! -Babatunde Olatunji
I hope my candor in this entry will be taken as just that and nothing more. I am thrilled to be here and to be alive, but there are times or days when that feeling can be difficult to connect with. I am happy to say I have had my LVAD for 10+ months and am going strong and probably better than average. I am on LTD disability and do not anticipate returning to work. I don’t believe I can do so without putting my well being in further jeopardy. The LVAD does require a number of daily chores and maintenance activities. They are not horrific by any means, but can be lot for someone to perform depending on their health or caregiver availability. I am lucky to have my partner Don who has been a wonderful and willing caregiver while I recovered to total self sufficiency. I am able to run errands, shop, do most average cleaning tasks. Extended physical exertion and exposure to heat and/or sun does wear me down quickly. So I can’t do a theme park from sunrise to past sunset, but I am OK with that, I just have to do things in measured doses so to speak.
Anyway, the day starts like most everyone’s, just a few extra chores to get started. For me it starts with who is going to make the coffee! Fortunately my partner takes care of that on most days. If I do it, I have to get semi-dressed, unhook from the tether to my portable battery charger unit (PBU) and connect to two batteries, each about the size and weight of an old laptop battery. The tether or the two batteries connect via a controller box just under 4 inches square and about 1 inch thick. The controller can clip on a belt, a pocket, or a waist band, etc. The batteries must be carried via a pouch, a special belt, or harness. So there is a little more to getting dressed than usual.
A physical challenge is what or where to but the batteries as they and their connecting holster as they are a bit clunky. I think sometimes I also have a mental block dealing with disconnecting and going on batteries, I guess it as just a different dimension of: “I have to get out of bed in the morning…I have to put on my batteries…..so I can make the coffee …and go out and get the paper….”. Anyway, the manufacturer’s harness is not particularly user friendly and I don’t care for it (I don’t know anyone who does). So I have gotten very creative, I wear cargo shorts or pants most of the time. They can be purchased inexpensively at an army/navy surplus type store, or high end fashion at your favorite clothing store depending on your liking (or pocketbook). The side pockets are in just the right location for both batteries and their respective cable length. Since I don’t have much of a butt in spite of working out, biking, etc.(AND NO I WON’T GET BUTT IMPLANTS, I may live in LA, but I have not lost all self respect), a belt usually is not enough to manage my pants + the weight of the batteries; therefore, I wear suspenders most of the time. I have cloth, leather, and chainmail suspenders; something for almost every occasion. So I have come up with a variety of options so as to not feel too limited. The need to accommodate the batteries and controller holds true for the remainder of the day.
I have tried to turn the battery frustration into an opportunity as a friend who is a leather smith is helping me design a couple of alternate belts/ harnesses for coping with wearing the batteries. Having survived major back surgery himself with a body cast, etc.; he understands how the little things can improve the quality of life. This could be a minor business opportunity, I will have too wait and see.
There are other tasks associated with my LVAD, THEY are not major but essential. I must maintain a log of blood pressure, pulse, temperature, and weight (gains or losses of just a few pounds can be a good indicator of a potential health issue). In addition to these relatively normal measurements, I must also log the Rate, Volume, and Flow from my PBU (portable battery charging unit) before disconnecting from its tether to the batteries.
· RATE, this is sort of like my pulse or heartbeat, but rather than my own, it is the LVAD’s Rate. The LVAD has two options it may operate at: Fixed Rate and Auto Rate. Fixed Rate is usually set at a default of 50 and is considered to be an energy saving pace. Auto Rate is set up to respond according to my own body’s demand on the heart. The greater the exertion, the higher the rate, kind of like your native heart. It does have a maximum of 120 bpm (beats per minute).
· VOLUME, expressed in millimeters (ml) per beat (or stroke). This can vary significantly; mine has run from 45 to 85 mls, but 60 to 80 is probably more like the desired range).
· FLOW, expressed as liters per minute, has a typical range of 4 to 10 liters per minute (for the LVAD). A heart in complete failure would have close to a 0 liter flow. (I won’t live long like that). The minimum at rest what I have read is around 4.2. Again, the greater the demand on the heart, the higher the liters per minute blood flow must be to meet the demands of your body.
There are a large number of factors which can affect the output of your heart and your LVAD, but that will have to be the subject of another blog entry.
Other normal morning routines are not out of the ordinary, brush your teeth, shave, wash your face, etc. Most of us also like to include a daily, if not more often shower. One can still take a shower when over they want, but the days of the minute in and out shower are gone, at least for now. Since I am all wired up either to direct power or batteries, it is an entirely different procedure now. One certainly can not do it when directly hooked up to the live power of the PBU; you must be hooked up to your batteries. They have a special shower kit in which you hook up your vent/power hose and insert your electric controller and batteries. It then hangs upside with the opening down so to protect from water in the shower (from your shoulder). The next step I take is I do place a plastic wrap covering over the open wound dressing to minimize how wet it gets.
The taking of a shower itself can only be performed with a hand held shower device. I do perform mine standing, but most I believe take it sitting on a bathing stool. Basically you bath one portion of your body at a time taking care to avoid getting your dressing wet. This is particularly crucial until the “open wound has healed” to its maximum potential. I say maximum potential, because it is a continual process; somewhat like your fingernails, the wound is always healing and as such is my most vulnerable place for infection.
If one chooses not to shower, there is always the sponge bath method, or a combination of the two. Personally I do miss the quickie shower. Now I usually opt out for the sponge bath as it is less complicated than the new shower routine.
After the bathing (or anytime I become exceptionally sweaty), there is one more chore: changing the dressing over the exit tube using “sterile procedure” or at least almost sterile. At home it really is practically impossible to truly use sterile procedure, but I do try to come as close as possible. I won’t go into full detail, but you have this tube coming out of your gut that your skin has grown attached (or in the process). Currently there is only one recommended antibacterial cleaning pad recommended as it has no residue (essential for this kind of wound). I then cover it with sterile dressing, tape things up, and then put on a support belt that helps hold the exit tube in place. I call it my LVAD corset. It really doesn’t do anything for the “spare tire”, but it does keep the exit tube in place, and is my newest required component when dressing.
The rest of the day is near normal. Some of the variations from I would have considered a normal day as well as some of the activities I can perform are:
...I do struggle with depression and anxiety associated with my various health maladies. As my health in general has improved, so have these conditions. These issues are very common during pre-diagnoses of my other health issues, and for different reasons will always be a part of the recovery.
...I am more sensitive to cold and heat (heat in particular)
...Dietary habits have changed as I no longer can eat a big meal, instead I must eat smaller meals and more of them. Hey, this is recommended anyway right? I just happen to have an LVAD that takes up half my stomach and forces me to adhere to that practice.
...Fortunately I can eat most anything I want, I have no cholesterol issues, blood pressure, etc.; although they do encourage me to not over indulge on anything with sodium or caffeine, and eat a potassium rich diet. I usually do not eat a lot of fat or sugar calories either.
...I manage demands on my energies so I can get through the day. Afternoon naps are not uncommon.
...I require more sleep, or perhaps I have become more aware of what my sleep needs really are. When I was a workaholic, 4 hours (and a few all nighters) were common. Now I really must have between 8 and 10 hours sleep.
...My activities are not be as vigorous as before, but I do live a fully active life.
...High impact activities are NOT recommended, i.e. running, jumping, wrestling, falling, etc.
...I do work out and do low impact cardio on a regular basis, (including riding my bike when I choose). There are considerations one must keep in mind, but that again will be another blog entry.
...I can prepare and cleanup from my own meals, do moderate housework, work in the patio garden for short periods of time.
I can shop, go to the movies, attend the local farmers market, or go for a walk in the neighborhood.
...I do web surf, watch TV, read and write a lot. Admittedly these are easier activities, but choose not to be restricted to these activities.
...I do see more than my fair share of doctors, requisite lab works etc.
...OH and there is SEX J, after appropriate recovery, YES one can have SEX! (or intimacy as stated in the manual)
So much of life after LVAD can be near normal. There is one more component I must keep in mind is what do I do when I leave the security of home and being close to my PBU? Long distance travel I will cover later, but for daily outings, there is a little planning required. Yes, I can drive, ride a bike, and this fall I plan to get a motorcycle again (a Harley I hope). But, I must plan my battery usage, portable emergency gear. I wear two dog tags that show that I am an LVAD patient and that I have a pacemaker. I also include ALL my medications between the 2 tags. I probably have a longer list than most (20+) due to the multiple conditions I have. Then there is my emergency bag…..
It is not too conspicuous, about the size of a large “fanny pack”. In it I carry at least 2 spare pairs of batteries, a spare controller with cables, replacement vent filters, a manual or hand pump (with instruction card) for the LVAD, another copy of my medication list, my emergency contacts, and my cell phone. So it’s not all that bad. The batteries typically last 4-5 hours, this will depend on the actual demand or activity. I have taken 3 pairs a couple of times, but it is rare that I am away from home that long. I tease people and say I can jump start their car or keep their laptop running longer than their battery!
In the beginning of recovery, it did seem like an awful lot to do. There are times even now that it overwhelms me. However, the alternative is I would not be here. I know I don’t have the worst challenges in the physical life as there are many with greater challenges than myself. They often handle it with what seems to be with effortless zeal for life. Of them I stand in awe.
It is like an actor who personifies a character in a movie with the greatest ease…what we don’t see is the preparation performed by the actor to achieve his performance. I think the same is true for us with different disabilities; it was a journey to get where we are at the present, the difference is our journey continues.
If you have an LVAD or it has been recommended as a treatment, please drop me a line, I will be happy to share my experiences that I may not have yet been shared on the blog. There are not many of us (yet), and we (and our caregivers) need to share and support each other.
More to Come,
Josh
Do not question or regret the past as it cannot be changed. Strive for the moment and all that it can be as the journey does continue. –jb
...Today is a gift, that's why they call it the present! -Babatunde Olatunji
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