"In three words I can sum up everything I've learned about life. It goes on." Robert Frost
Funny thing about life, it does go on, regardless of what I may or may not do. The last part being the crucial piece: “regardless of what I might do”. I have been blessed, truly blessed with a fabulous medical team, spouse, family, friends. Without them, I truly would not be here and life would not be “going on” as we generally define it. I do believe life goes on beyond the physical encasement we call a body, and therefore life would go on whether it be as we know it today, or in a different form or dimension tomorrow.
I frequently thank about the lives we live. Even within this physical dimension, we live multiple lives. Are “private or personal life”, our public life, the life we live with a spouse or special, and on and on. I would even venture to say we live different lives at different stages of our life.
I had a 50/50 chance of making to today and there is a 1 in 4.5 chance of me making it another year. Most of the time I it a day at a time; sometimes it is only a moment at a time. Having had to focus on goals and objective work wise for so long, I feel like I need to define my next goal, objective, milestone, or barrier I wish to break. I do have a few things on my bucket list, but not much I guess.
Probably the one that grabs me most at the moment would be to get my motorcycle driver’s certification, license, and then purchase a cycle. It would be great to get a second set of wheels in the house as it would make things a little easier instead of always taking my partner to work so I can have the car. I mean most of the time it does matter much, but it does hinder a certain amount of spontaneity in my life. Besides I have always wanted to get one again from the time I sold my last one.
It certainly would make it easier to solve my cabin fever at times. Whether it is to go to the store, the library, or to meet a friend for coffee or lunch; it means me making 3 trips in the car. 1) Take Don to work, 2) to actual go to lunch, and then 3) pick Don up from work. Fortunately, we do live close to his job; so it probly is more of an inconvenience than anything. Public transit is so cumbersome here in LA. It is not like NYC, Washington DC, or Atlanta. LA is just so spread out multiple transfers with bus and/or subway. With my own transportation, it would be so much easier to get up and go. Of course I also could use the excuse that it would still be economical, and we would have better luck making room in the garage for it.
I think it also will do a lot for my self esteem to have my own wheels again. So getting a cycle would solve a couple of minor problems and be fun at the same time. And at this point in my life, I do not see anything wrong with that. Regardless, life will go on.
More to come,
Namasté
Saturday, August 30, 2008
Tuesday, August 26, 2008
“Every patient is a doctor after his cure.”
“Every patient is a doctor after his cure.” Irish Proverb
With all my ego, I would paraphrase it and say: “Every GOOD patient should be a doctor after his own cure.” This is by no means a discount to the medical profession; this is just to say that every patient or “advocate/caregiver” should try to be as knowledgeable about one’s health issues as possible. I think I have said this before, but bears repeating and I probably will say it again as it almost cannot be understated. I would never suggest that I know more than my doctors, but as much as medicine is a highly studied profession, it is also a very skilled craft. As a patient, the more I know about my health challenges, the better I can participate in deciding my treatment and understand the prospects of my recovery.
Sorry it has been a few days since writing, It is so easy to get wrapped up in a little project and all the sudden the day is gone. The last couple of weeks I have been catching up on my regular and recurring doctor visits (most are quarterly now). I do see quite a few but, sometimes the HMO’s or setup, and care is dissected into many small pieces. As a result, it usually takes a minimum of 2 doctor visits to get a diagnosis. I see my primary care physician only to have to obtain a “referral” to see a specialist. The specialist will often require lab work of some kind (where I have to go somewhere else to have it performed); and then a follow-up visit for diagnosis and prescribed treatment. Depending on the ailment, it then may require a follow-up visit to validate recovery (may even require additional lab work to confirm). So it becomes very easy to feel like I am seeing doctors all the time as I often am.
It seems you almost never can schedule more than one doctors visit in a day. What a waste! They are not in the neighborhood, they are over the hill as we ever so politely describe by living in the valley verses living in Hollywood/Los Angeles “proper”. So with traffic, parking (gas and parking fees), it is at least a half day affair to see a doctor, and of course if there is lab work to be done, it is usually another trip as most of my tests require I fast prior to drawing my blood (glucose tolerance test usually). So with the significant number of Dr’s I see, it is a lot of medical trips.
I had my annual physical a couple of weeks ago and as a whole, everything went well. My blood work was good (triglycerides were a little high). High cholesterol has never been a problem, thyroid tests were OK. I had been a little concerned about my thyroid levels as I have been a little more tired lately and I have felt I have become even more sensitive to temperature extremes. Being on Amiodarone which is highly toxic, it sometimes can affect thyroid function in particular. It seems there are no problems in that area for now.
My infectious disease doctor’s lab work was also OK. It showed that my viral load as still being undetectable and my CD4 counts are still in the low to mid 100’s. Normal CD4 count of 700-1000 is generally accepted as being the normal range for most folks, and anything over 400 or 500 would be considered healthy for someone with HIV. I have known folks with counts significantly higher than “normal” as well as those with virtually 0 CD4 counts. My CD4 count has been as low as 10-15, but has remained pretty steady at the low to mid 100’s for the last year or so. I would love to see it go higher, but at least it has remained stable, and I am otherwise healthy.
Besides the impact that AIDS/HIV has on the immune system, the LVAD implant apparently complicates the picture where immune response is concerned. There are the concerns of infection with the implantation of the LVAD (open heart surgery and percutaneous exit tube that comes through the stomach wall and through the skin is a long term risk entry point for infection) combined with a patient with an existing immune deficiency as a result of AIDS. This alone is a cause for concern. But, the LVAD seems to also have a negative impact on the body’s immune response. From what I have read, it does not aggressively destroy the body’s immune system like AIDS, but it does seem to suppress its response in some way. I guess it would be something akin to take one of the crutches away from a man with a broken leg, resulting in further hampering his mobility.
I also had my one year follow-up for my LVAD. Received a 2-D echo test (sort of like a sonogram), a 6 minute walk test with blood pressure and blood O2 saturations monitored; all with good results. I won’t need to go back for a couple of months now unless I have a problem. I actually miss them when I don’t see my “cardiac gang” at Cedar’s as they are a key component of my support; not just the medical side of things as they also feel like family to me and I feel connected with them on many levels.
To finish things off, I had to also go to a dermatologist. It seems I have picked up a fungus of some sort on my left hand. I tried a couple of different “over the counter products” without success. So it was off to another doctor. The dermatologist was young, professional, and attentive. As a result of in office examination, I am using a stronger antifungal crème (prescription) as well as an oral antifungal treatment. The unusual thing is I only have it on my left hand and not both. He thought it was unusual as did I and had no idea as to why. He also froze/burned off a couple of precancerous skin lesions. Need to keep those in check due to my compromised immune system and some of my medications make my skin ultra sun sensitive. He now wants me to come in annually for a skin examination.
Well that is it on catching up with most all my doctors; I do still need to see my electro-physiologist to review my pacemaker interrogation and settings. One of the pacemaker leads belongs to a recall of potentially defective pacemaker leads, but the risks are greater (for me anyway) to replace it than it is to monitor it closely. They have adjusted the sensitivity of the malfunction detection for that lead and I am comfortable with that. My pacemaker activity is transmitted nightly, so any irregularities would be picked up on very quickly.
Otherwise, it is situation normal…all f***** up. Thinks could be better, but they actually could be a whole lot worse. I least am alive, with a partner I have had for almost 17 years, and will be here for another sunrise tomorrow.
Namasté
With all my ego, I would paraphrase it and say: “Every GOOD patient should be a doctor after his own cure.” This is by no means a discount to the medical profession; this is just to say that every patient or “advocate/caregiver” should try to be as knowledgeable about one’s health issues as possible. I think I have said this before, but bears repeating and I probably will say it again as it almost cannot be understated. I would never suggest that I know more than my doctors, but as much as medicine is a highly studied profession, it is also a very skilled craft. As a patient, the more I know about my health challenges, the better I can participate in deciding my treatment and understand the prospects of my recovery.
Sorry it has been a few days since writing, It is so easy to get wrapped up in a little project and all the sudden the day is gone. The last couple of weeks I have been catching up on my regular and recurring doctor visits (most are quarterly now). I do see quite a few but, sometimes the HMO’s or setup, and care is dissected into many small pieces. As a result, it usually takes a minimum of 2 doctor visits to get a diagnosis. I see my primary care physician only to have to obtain a “referral” to see a specialist. The specialist will often require lab work of some kind (where I have to go somewhere else to have it performed); and then a follow-up visit for diagnosis and prescribed treatment. Depending on the ailment, it then may require a follow-up visit to validate recovery (may even require additional lab work to confirm). So it becomes very easy to feel like I am seeing doctors all the time as I often am.
It seems you almost never can schedule more than one doctors visit in a day. What a waste! They are not in the neighborhood, they are over the hill as we ever so politely describe by living in the valley verses living in Hollywood/Los Angeles “proper”. So with traffic, parking (gas and parking fees), it is at least a half day affair to see a doctor, and of course if there is lab work to be done, it is usually another trip as most of my tests require I fast prior to drawing my blood (glucose tolerance test usually). So with the significant number of Dr’s I see, it is a lot of medical trips.
I had my annual physical a couple of weeks ago and as a whole, everything went well. My blood work was good (triglycerides were a little high). High cholesterol has never been a problem, thyroid tests were OK. I had been a little concerned about my thyroid levels as I have been a little more tired lately and I have felt I have become even more sensitive to temperature extremes. Being on Amiodarone which is highly toxic, it sometimes can affect thyroid function in particular. It seems there are no problems in that area for now.
My infectious disease doctor’s lab work was also OK. It showed that my viral load as still being undetectable and my CD4 counts are still in the low to mid 100’s. Normal CD4 count of 700-1000 is generally accepted as being the normal range for most folks, and anything over 400 or 500 would be considered healthy for someone with HIV. I have known folks with counts significantly higher than “normal” as well as those with virtually 0 CD4 counts. My CD4 count has been as low as 10-15, but has remained pretty steady at the low to mid 100’s for the last year or so. I would love to see it go higher, but at least it has remained stable, and I am otherwise healthy.
Besides the impact that AIDS/HIV has on the immune system, the LVAD implant apparently complicates the picture where immune response is concerned. There are the concerns of infection with the implantation of the LVAD (open heart surgery and percutaneous exit tube that comes through the stomach wall and through the skin is a long term risk entry point for infection) combined with a patient with an existing immune deficiency as a result of AIDS. This alone is a cause for concern. But, the LVAD seems to also have a negative impact on the body’s immune response. From what I have read, it does not aggressively destroy the body’s immune system like AIDS, but it does seem to suppress its response in some way. I guess it would be something akin to take one of the crutches away from a man with a broken leg, resulting in further hampering his mobility.
I also had my one year follow-up for my LVAD. Received a 2-D echo test (sort of like a sonogram), a 6 minute walk test with blood pressure and blood O2 saturations monitored; all with good results. I won’t need to go back for a couple of months now unless I have a problem. I actually miss them when I don’t see my “cardiac gang” at Cedar’s as they are a key component of my support; not just the medical side of things as they also feel like family to me and I feel connected with them on many levels.
To finish things off, I had to also go to a dermatologist. It seems I have picked up a fungus of some sort on my left hand. I tried a couple of different “over the counter products” without success. So it was off to another doctor. The dermatologist was young, professional, and attentive. As a result of in office examination, I am using a stronger antifungal crème (prescription) as well as an oral antifungal treatment. The unusual thing is I only have it on my left hand and not both. He thought it was unusual as did I and had no idea as to why. He also froze/burned off a couple of precancerous skin lesions. Need to keep those in check due to my compromised immune system and some of my medications make my skin ultra sun sensitive. He now wants me to come in annually for a skin examination.
Well that is it on catching up with most all my doctors; I do still need to see my electro-physiologist to review my pacemaker interrogation and settings. One of the pacemaker leads belongs to a recall of potentially defective pacemaker leads, but the risks are greater (for me anyway) to replace it than it is to monitor it closely. They have adjusted the sensitivity of the malfunction detection for that lead and I am comfortable with that. My pacemaker activity is transmitted nightly, so any irregularities would be picked up on very quickly.
Otherwise, it is situation normal…all f***** up. Thinks could be better, but they actually could be a whole lot worse. I least am alive, with a partner I have had for almost 17 years, and will be here for another sunrise tomorrow.
Namasté
Thursday, August 21, 2008
Dream as if you'll live forever, live as if you'll die today.” (LVAD or NOT)
Dream as if you'll live forever, live as if you'll die today.” (LVAD or NOT)
(reedited 8/22/2008)
This describes what I want to do or how I want to live life, but yet to have found the key or the formula to allow me to accomplish this. I know more so than most that I am not going to live forever, that side of the equation has been somewhat truncated. I have End Stage heart failure and an LVAD, AIDs, Manic Depression, and Anxiety. I guess I have always had the last two most of my life for various justifiable reasons. As other medical issues developed; my episodes with depression and anxiety have grown more frequent. I do wish or think there was a magic pill to resolve the depression and anxiety; although there are treatments that have proven to be beneficial and can all but cure the depression and anxiety, but it won’t be by the pills allone. I do see a therapist on a regular basis as well as doctors for my other ailments.
There are many factors’ that play into this, part is 1) heredity, my 2) family and 3) upbringing, 4) how I have lived my life, 5) my belief system, and 6) alas in what cards life has dealt me.
I could discuss heredity, my family, and upbringing; but I am not looking for unwanted sympathy as it is what it is. I also am not looking to embarrass any member of my family anymore than I might already be doing so. In the end, they could not have been more loving and caring as they could be and there is nothing more I could ask of them. Well that takes care of the first three real neat.
The forth one, I have only myself to hold accountable. Over all I was a hard worker, pretty much a workaholic, probably mostly my fault considering my tendencies. I had a job in the computer industry and what so many of those newsy exposé’s would indicate; we computer geeks worked long and hard, but we also partied long and hard. That definitely takes a toll on one’s life and health. Although not always the financially responsible person, I did manage to buy 3 homes, stayed with the same company for 30 years winning numerous performance awards. Many would say that should have been a rewarding life. But as many know, there always must be more.
# 5 - My belief system is still something I am working on and cannot say that I necessarily will ever be done. I was raised Methodist, studied to be a minister (probably Presbyterian) and then discovered I did not believe in the god of my “fathers”. I can’t say there is no God as I do believe there is a higher or greater self for whom all of us together make up God in one dimension or another (or in many).
I like using the greeting, ”Namastè”;it is a salutation that is a Sanskrit term which can be understood to mean, that I respect that divinity within you that is also within me. {I}1.^ a b Sivasiva Palani (November 1991). "Never Shake Hands With God". Hinduism Today.
This is my favorite interpretation as it seems to ring truest to my own idea of “god” if there is such a deity to which I believe in. In most languages, it was/is used as a gesture of greeting to welcome the other into one’s home, or one’s table.etc.
Overall, life has be quite good to me, I had a great job and just I loved it, I just no longer could perform it. Heart failure became the sinking bullet and I had to go on LTD disability. With AIDS, it was evitable for it to have come sooner or later. I had dealt with alcohol and partying, receiving treatment for depression, and coping with the loss of the first love of my life who passed from AIDS after being together for 10 years in 1991. Fortunately, I soon met my second partner, Don (domestic partners-and hope to wed this fall) and still lovers after 17 years.
As my AIDS infection worsened and I developed pneumonia again b ), it was painfully obvious how large my heart had become.But I just wasn’t willing to face or accept it as I was never overweight, exercised pretty regular; low cholesterol, no plaque buildup, clear lungs; no diabetes, ; I just didn’t want this thing to get the best of me. My enlarged heart was indeed caused by two factors. 1) Long Term AIDS Survivor has a significantly higher risk for cardiomyopathy and 2) My family has a longstanding history of cardiomyopathy.
Diagnosed with heart Failure 1/2007 – implanted Bi-ventricular Re-synchronizing Defibrillating Pacemaker
Diagnosed with heart failure again 8/2007 - implanted the LVAD (Thorotec Heartmate XVE)
Physical Therapy until the first of the year, then I was allowed to start light on the weights in January. Making fair progress: check my blog on Cardiac Athletes (great bunch of folks here):
http://www.cardiacathletes.org.uk/forums/showthread.php?t=669
August 30th will be my LVAD Unit’s One YR Birthday
This has left me pondering some things. Depending on the study one reads, I have/had 57% chance of survival to my first birthday of my LVAD and only a 23% chance of survival at 2 years with one of the more common causes being devise failure. The average life expectancy of my particular model (Heartmate XVE) is in the neighborhood of 18 to 24months. So it is not a precise science as to when it must be replaced, but then for most of my adult life, I have always accepted medicine was as much an Art as a Science.
So knowing I face open heart surgery again (in fact multiple times assuming I survive that long). I guess they will just put a zipper in! :).
So I guess I will close asking the same question that the title begs to be asked: “when does one know they have achieved living life as if there was no tomorrow?”
More later,
Namastè,
Josh
(reedited 8/22/2008)
This describes what I want to do or how I want to live life, but yet to have found the key or the formula to allow me to accomplish this. I know more so than most that I am not going to live forever, that side of the equation has been somewhat truncated. I have End Stage heart failure and an LVAD, AIDs, Manic Depression, and Anxiety. I guess I have always had the last two most of my life for various justifiable reasons. As other medical issues developed; my episodes with depression and anxiety have grown more frequent. I do wish or think there was a magic pill to resolve the depression and anxiety; although there are treatments that have proven to be beneficial and can all but cure the depression and anxiety, but it won’t be by the pills allone. I do see a therapist on a regular basis as well as doctors for my other ailments.
There are many factors’ that play into this, part is 1) heredity, my 2) family and 3) upbringing, 4) how I have lived my life, 5) my belief system, and 6) alas in what cards life has dealt me.
I could discuss heredity, my family, and upbringing; but I am not looking for unwanted sympathy as it is what it is. I also am not looking to embarrass any member of my family anymore than I might already be doing so. In the end, they could not have been more loving and caring as they could be and there is nothing more I could ask of them. Well that takes care of the first three real neat.
The forth one, I have only myself to hold accountable. Over all I was a hard worker, pretty much a workaholic, probably mostly my fault considering my tendencies. I had a job in the computer industry and what so many of those newsy exposé’s would indicate; we computer geeks worked long and hard, but we also partied long and hard. That definitely takes a toll on one’s life and health. Although not always the financially responsible person, I did manage to buy 3 homes, stayed with the same company for 30 years winning numerous performance awards. Many would say that should have been a rewarding life. But as many know, there always must be more.
# 5 - My belief system is still something I am working on and cannot say that I necessarily will ever be done. I was raised Methodist, studied to be a minister (probably Presbyterian) and then discovered I did not believe in the god of my “fathers”. I can’t say there is no God as I do believe there is a higher or greater self for whom all of us together make up God in one dimension or another (or in many).
I like using the greeting, ”Namastè”;it is a salutation that is a Sanskrit term which can be understood to mean, that I respect that divinity within you that is also within me. {I}1.^ a b Sivasiva Palani (November 1991). "Never Shake Hands With God". Hinduism Today.
This is my favorite interpretation as it seems to ring truest to my own idea of “god” if there is such a deity to which I believe in. In most languages, it was/is used as a gesture of greeting to welcome the other into one’s home, or one’s table.etc.
Overall, life has be quite good to me, I had a great job and just I loved it, I just no longer could perform it. Heart failure became the sinking bullet and I had to go on LTD disability. With AIDS, it was evitable for it to have come sooner or later. I had dealt with alcohol and partying, receiving treatment for depression, and coping with the loss of the first love of my life who passed from AIDS after being together for 10 years in 1991. Fortunately, I soon met my second partner, Don (domestic partners-and hope to wed this fall) and still lovers after 17 years.
As my AIDS infection worsened and I developed pneumonia again b ), it was painfully obvious how large my heart had become.But I just wasn’t willing to face or accept it as I was never overweight, exercised pretty regular; low cholesterol, no plaque buildup, clear lungs; no diabetes, ; I just didn’t want this thing to get the best of me. My enlarged heart was indeed caused by two factors. 1) Long Term AIDS Survivor has a significantly higher risk for cardiomyopathy and 2) My family has a longstanding history of cardiomyopathy.
Diagnosed with heart Failure 1/2007 – implanted Bi-ventricular Re-synchronizing Defibrillating Pacemaker
Diagnosed with heart failure again 8/2007 - implanted the LVAD (Thorotec Heartmate XVE)
Physical Therapy until the first of the year, then I was allowed to start light on the weights in January. Making fair progress: check my blog on Cardiac Athletes (great bunch of folks here):
http://www.cardiacathletes.org.uk/forums/showthread.php?t=669
August 30th will be my LVAD Unit’s One YR Birthday
This has left me pondering some things. Depending on the study one reads, I have/had 57% chance of survival to my first birthday of my LVAD and only a 23% chance of survival at 2 years with one of the more common causes being devise failure. The average life expectancy of my particular model (Heartmate XVE) is in the neighborhood of 18 to 24months. So it is not a precise science as to when it must be replaced, but then for most of my adult life, I have always accepted medicine was as much an Art as a Science.
So knowing I face open heart surgery again (in fact multiple times assuming I survive that long). I guess they will just put a zipper in! :).
So I guess I will close asking the same question that the title begs to be asked: “when does one know they have achieved living life as if there was no tomorrow?”
More later,
Namastè,
Josh
Sunday, August 17, 2008
Me and my LVAD returns to Los Angeles
Me and my LVAD returns to Los Angeles
Flying might not be all plain sailing, but the fun of it is worth the price. -Amelia Earhart, "The Fun of It", 1932
If you had asked me 6 months ago how I thought the trip would go, I would have been very anxious in my reply. This was a trip to see my in-laws and knew that would go as well as it could. The actual flying part didn’t bother me either to be honest. What I was most concerned about was the preparation of documenting my medical condition, my LVAD and its internal/attached components as well as all the support gear. The trek of gathering and preparing this information, getting in touch with the right people in order to advise them of my situation and personal medical equipment required, did take patience and perseverance. After all I did not want to go to the airport with several bags of gear that might/would look suspicious to the untrained eye.
Before I go on, let me express that patience, cooperation, and understanding is critical. Although the airports I traveled are high volume airports and they have far greater exposure to the wide array of things that passengers might try to bring on board whether medically necessary or not. It would be a tough job for most anyone of average intelligence (no insult intended here-just saying it is a tough job) to stay on top of what is safe and or reasonable necessary for a passenger to carry on board.
For those who plan to fly, and have an uncommon medical apparatus, especially one with internal/external medical components; DO PLAN TO DO SOME HOMEWORK IN PREPARATION. On TSA’s website and through most airline or travel websites will show you what devices are already acknowledged like pacemakers, certain types of assisted breathing devices and so on. Check out the website ( http://www.tsa.gov/travelers/airtravel/specialneeds/index.shtm ), they may be aware of your type device and all you need is a doctor’s waver that it is ok for you to fly (depending on the situation with somebody else or by yourself). This should be dated relatively close to your travel dates. The next most important thing is if you have extra carry-ons due to your medical condition, then it would be beneficial to have or prepare documentation as to why certain items may need to be part of your carry-ons.
In addition to your doctors release and any other documentation you decide to prepare, there are some contacts you should make (make record of who and when you spoke to someone and the outcome) I recommend you advise the airline(s) at both the time of purchase of your tickets and then call a couple of days prior to your departure, re-advise them of your situation and have them list you as needing assistance to pre-board if that is applicable. I had three carry-on’s of significant size (total of 120+ pounds total), so pre-boarding was essential in order to insure they were close at hand should the need arise. For example, my batteries last about 4 hours, so I need access to change my batteries as needed. The bulk of my gear has to do with if the flight were delayed, canceled, or aborted mid trip and I get stuck staying in an airport/hotel over night overnight without my luggage, my carry-ons must support me until I reach my destination which includes the balance of my life support equipment as my rechargeable batteries will only last about 24 hours before needing to be recharged.
In working with TSA in preparation of the trip I had to be pretty persistent to obtain specific airport contacts for LAX and Columbus Ohio. Once I was able to reach these individuals, it seemed like everything came into place. With Delta reservations, I did have to speak with a reservations manager in order to feel that I had succeeded in conveying my specific medical needs in order to travel. I will say all contacts at both TSA and Delta were positive in stating that most any equipment within reason that was medically necessary and fit safely on the plane would be accommodated. Since mine involved several carry-on bags for one person, I really persisted in them understanding that ahead of time.
So even though the destination of visiting my in-laws may not have been my top destination choice, it was a successful uneventful trip travel wise much to my surprise. I won’t give individual names here for privacy sake, but I will say to the TSA managers and crews handling security at LAX, Terminal 5, August 10, evening shift (8:00 p.m.) and the Columbus, Ohio, Terminal C, August 15th late afternoon, (5:30 p.m.) were stupendous. I could not have asked for a better experience. I am sure this is the type experience they work hard to achieve for all passengers. I know unfortunately there are some who haven’t had as pleasant an experience. I honestly believe in most cases it was individual’s response (whether it be a TSA employee’s or the passenger’s) that comes into question and not by TSA itself. I have been to have a short fuse which would not help if things went awry from a passenger’s vantage point, as well as seeing an agent over extend or mishandle their authority. It is going to happen.
And to Delta (flight 1766 to LAX to CMH on 8/10 and1673 CMH to LAX on 8/15), I will say my pre-board could not have been nicer. They assisted me with my bags (I know they went beyond what should be expected in the assistance), they were just great!
So this is definitely one time I can give kudos to TSA and to Delta as they provide a very positive start and finish to my first flight since receiving my LVAD implant. They were great! (And no this is not a paid advertisement, and I, Josh Bristow authorize this statement) J.
This trip opens the door for me to future travel. Although I cannot afford to travel as much as I would like, at least I know I can. I do plan to see my sister soon in Florida and other friends as finances permit.
My next adventure is to again return to weight training and cycling. In spite of knowing what is good for me, I sort of stopped working out for a couple of months. I do miss it and I know it does pick up my spirits a bit when I do. With the success of this trip to build on, returning to the gym should help with my sense of ability and capacity to live. I have struggled with depression for a good part of my life and I have allowed my current medical challenges with life to feed my depression. Sure I have reason enough to feel depressed. I equally have reason to want to live the rest of my life to its fullest. This is what I will strive for. I know returning to my workout routine at the gym will help in dealing with my battles of depression. We also have adjusted a couple of my medications, so hopefully the combination of changes/efforts will make it easier to see the sunnier side of life.
Anyway enough for this entry, now that I am home, I have more doctors to see this next week as I traverse this journey of life. For the most part all is good and that I need to focus on.
I want to give a special thinks for the support of my life partner Don who has had to cope with all the changes in my life and accept them as part of his own.
Namaste
Flying might not be all plain sailing, but the fun of it is worth the price. -Amelia Earhart, "The Fun of It", 1932
If you had asked me 6 months ago how I thought the trip would go, I would have been very anxious in my reply. This was a trip to see my in-laws and knew that would go as well as it could. The actual flying part didn’t bother me either to be honest. What I was most concerned about was the preparation of documenting my medical condition, my LVAD and its internal/attached components as well as all the support gear. The trek of gathering and preparing this information, getting in touch with the right people in order to advise them of my situation and personal medical equipment required, did take patience and perseverance. After all I did not want to go to the airport with several bags of gear that might/would look suspicious to the untrained eye.
Before I go on, let me express that patience, cooperation, and understanding is critical. Although the airports I traveled are high volume airports and they have far greater exposure to the wide array of things that passengers might try to bring on board whether medically necessary or not. It would be a tough job for most anyone of average intelligence (no insult intended here-just saying it is a tough job) to stay on top of what is safe and or reasonable necessary for a passenger to carry on board.
For those who plan to fly, and have an uncommon medical apparatus, especially one with internal/external medical components; DO PLAN TO DO SOME HOMEWORK IN PREPARATION. On TSA’s website and through most airline or travel websites will show you what devices are already acknowledged like pacemakers, certain types of assisted breathing devices and so on. Check out the website ( http://www.tsa.gov/travelers/airtravel/specialneeds/index.shtm ), they may be aware of your type device and all you need is a doctor’s waver that it is ok for you to fly (depending on the situation with somebody else or by yourself). This should be dated relatively close to your travel dates. The next most important thing is if you have extra carry-ons due to your medical condition, then it would be beneficial to have or prepare documentation as to why certain items may need to be part of your carry-ons.
In addition to your doctors release and any other documentation you decide to prepare, there are some contacts you should make (make record of who and when you spoke to someone and the outcome) I recommend you advise the airline(s) at both the time of purchase of your tickets and then call a couple of days prior to your departure, re-advise them of your situation and have them list you as needing assistance to pre-board if that is applicable. I had three carry-on’s of significant size (total of 120+ pounds total), so pre-boarding was essential in order to insure they were close at hand should the need arise. For example, my batteries last about 4 hours, so I need access to change my batteries as needed. The bulk of my gear has to do with if the flight were delayed, canceled, or aborted mid trip and I get stuck staying in an airport/hotel over night overnight without my luggage, my carry-ons must support me until I reach my destination which includes the balance of my life support equipment as my rechargeable batteries will only last about 24 hours before needing to be recharged.
In working with TSA in preparation of the trip I had to be pretty persistent to obtain specific airport contacts for LAX and Columbus Ohio. Once I was able to reach these individuals, it seemed like everything came into place. With Delta reservations, I did have to speak with a reservations manager in order to feel that I had succeeded in conveying my specific medical needs in order to travel. I will say all contacts at both TSA and Delta were positive in stating that most any equipment within reason that was medically necessary and fit safely on the plane would be accommodated. Since mine involved several carry-on bags for one person, I really persisted in them understanding that ahead of time.
So even though the destination of visiting my in-laws may not have been my top destination choice, it was a successful uneventful trip travel wise much to my surprise. I won’t give individual names here for privacy sake, but I will say to the TSA managers and crews handling security at LAX, Terminal 5, August 10, evening shift (8:00 p.m.) and the Columbus, Ohio, Terminal C, August 15th late afternoon, (5:30 p.m.) were stupendous. I could not have asked for a better experience. I am sure this is the type experience they work hard to achieve for all passengers. I know unfortunately there are some who haven’t had as pleasant an experience. I honestly believe in most cases it was individual’s response (whether it be a TSA employee’s or the passenger’s) that comes into question and not by TSA itself. I have been to have a short fuse which would not help if things went awry from a passenger’s vantage point, as well as seeing an agent over extend or mishandle their authority. It is going to happen.
And to Delta (flight 1766 to LAX to CMH on 8/10 and1673 CMH to LAX on 8/15), I will say my pre-board could not have been nicer. They assisted me with my bags (I know they went beyond what should be expected in the assistance), they were just great!
So this is definitely one time I can give kudos to TSA and to Delta as they provide a very positive start and finish to my first flight since receiving my LVAD implant. They were great! (And no this is not a paid advertisement, and I, Josh Bristow authorize this statement) J.
This trip opens the door for me to future travel. Although I cannot afford to travel as much as I would like, at least I know I can. I do plan to see my sister soon in Florida and other friends as finances permit.
My next adventure is to again return to weight training and cycling. In spite of knowing what is good for me, I sort of stopped working out for a couple of months. I do miss it and I know it does pick up my spirits a bit when I do. With the success of this trip to build on, returning to the gym should help with my sense of ability and capacity to live. I have struggled with depression for a good part of my life and I have allowed my current medical challenges with life to feed my depression. Sure I have reason enough to feel depressed. I equally have reason to want to live the rest of my life to its fullest. This is what I will strive for. I know returning to my workout routine at the gym will help in dealing with my battles of depression. We also have adjusted a couple of my medications, so hopefully the combination of changes/efforts will make it easier to see the sunnier side of life.
Anyway enough for this entry, now that I am home, I have more doctors to see this next week as I traverse this journey of life. For the most part all is good and that I need to focus on.
I want to give a special thinks for the support of my life partner Don who has had to cope with all the changes in my life and accept them as part of his own.
Namaste
Monday, August 11, 2008
My LVAD Is In the SKY
My soul is in the sky. ~William Shakespeare, A Midsummer Night's Dream
August 11, 2008
Oddly enough, I had seen a performance of “A Midsummer Night’s Dream” late last week at an outdoor amphitheatre in Topanga Canyon. Never occurred to me to borrow and reword a quote from it since my LVAD was indeed in the sky through the night as I traveled from LAX to Columbus, Ohio. It definitely has been a long time coming. Second thoughts, frayed nerves, many phone calls, emails, and documentation, I made it; and surprisingly relatively smoothly. In fact, I HAVE TO SAY, VERY SMOOTHLY. All my preparations have paid off.
My first requirement was I would only take a direct flight so to minimize the risk of getting stranded. Fortunately there still remains (for now) one direct flight each way daily from LAX to Columbus. It did mean taking a “red-eye” overnight flight from LAX. I don’t like taking the “red-eye”, but it is a direct flight, it’s better than not going at all.
It started off of course in getting clearance from my doctors to insure there was no reason why I should make this kind of trip. No objections. I wouldn’t be the first, but would be one of the few who have taken on this kind of trip before and hopefully won’t be the last.
It is a pretty significant undertaking knowing that one must be connected to power at all times; whether it be batteries or direct power. I have 6 pairs of batteries which should keep me going for 24+ hours. So I felt everything should be OK time wise as long as all batteries are near max charge capacity. I also had to make sure I remembered to pack all supporting equipment, cables, emergency 24 hour battery, backup hand pump, portable charging unit, dressing supplies to perform sterile dressing changes. Check, check, double check.
Next step was to insure I could carry all my gear with me as carry-on. Since one never really knows if their luggage makes the same flight, or if a flight gets rerouted or aborted for some reason mid travel. I couldn’t live – literally- if the baggage with my medical gear were to be lost. My medical gear fills a standard carry on roll away, two small duffle bags, and a large “fanny pack”; and I also have a laptop along with reading materials, travel folio, etc. So I had a total of 4 carry-on’s and 1 personal item (fanny pack). So technically I had three extra carry-on’s for medical gear.
I had read everything on the airline’s website, and looked as though I should be in the clear, but LVAD’s and equipment are not listed as pre-approved or recognized handicap implements. I kept making my calls to the airline, and kept basically getting the same answer:”if it is medically necessary” and you can clear TSA, there will be no problem. So I moved on.
So moving on, I started researching and reading the information on TSA’s website. It contained the same “jibber jab” about exceptions for handicap individuals and only a general national 800 number. I called and explained my plight, received the same old thing. ‘Anything medically necessary will not be a problem, just be there 1.5 hours prior to your flight. Yeah Right! I finally was able to obtain the names of was responsible or in charge for TSA at both airports. Of course I was told their numbers were unpublished, after some coercion, I did receive a number, only to realize it was the airport general hone number. In the interim, I did try TSA email support and received the same generic “jibber jab” as I had already found on their website, so that was futile. I did persevere trying to track down the TSA contacts at the individual airports and eventually was able to get messages through to the contacts about my particular situation. They both were very courteous, understanding, and cooperative; seemed almost too good to be true.
Day before the flight: Delta advises on their website to call again 1-2 days in advance of your flight to re-advise them of your medical situation. It took a little doing to get someone to understand why I was call, but once I did – no problem – record updated.
Day of the flight: We arrive at the airport 3.5 hours early. I stopped at the Delta counter checking my “checkable” luggage. I once again wanted to make sure my record was marked so I could pre-board as my carry-on’s did not need to end up in the opposite end of the plane from where I was seated. All OK.
Now the scary part, will I pass muster at TSA? First they greeted me asking how many were traveling with me as they eyed all the carry-on baggage I had, and I said just 1. I know he would be surprised so I immediately into an explanation of my medical situation and requirements and asked for a supervisor. To my amazement, the advisor had been sent an email that morning advising him of my arrival and how to address/inspect my carry-on’s. It did take a little while for them to inspect everything- but there was a lot of stuff, BUT it go very smooth. I know there are horror stories out there that may or may not have happened, or should or should not have happened; but on my trip this time, they did a superb job. THANKS TSA!
Well we had plenty of time to kill, so we went and had a martini to celebrate what was starting off as a smooth trip. Thank God.
Now, on to the gate for my last pre-board check-in with Delta, my last threshold. Met the attendant at the gate and started to explain my situation and she stopped me before I could even utter my name. Stop – wait – I know , I know, your name is……..you have a memo record a mile long. We are already aware of your situation. I explained a couple of things and off we went to pre-board. Thank you DELTA!
So either I made a real pain in the “arse” of myself, or all the preparations paid off. I used to be a very frequent business travel and I do understand how flight schedules can go astray for any number of reasons and ruin a trip. However, I am most thankful to those at Delta(especially Corine!) and TSA for making the start of this trip smoother than I could have ever imagined. I expected the worst, but got the best. Unfortunately, things do not get to always work out this well, but this time they did. THANKS to all those who helped get my vacation off to a good start.
More to come,
Namaste,
August 11, 2008
Oddly enough, I had seen a performance of “A Midsummer Night’s Dream” late last week at an outdoor amphitheatre in Topanga Canyon. Never occurred to me to borrow and reword a quote from it since my LVAD was indeed in the sky through the night as I traveled from LAX to Columbus, Ohio. It definitely has been a long time coming. Second thoughts, frayed nerves, many phone calls, emails, and documentation, I made it; and surprisingly relatively smoothly. In fact, I HAVE TO SAY, VERY SMOOTHLY. All my preparations have paid off.
My first requirement was I would only take a direct flight so to minimize the risk of getting stranded. Fortunately there still remains (for now) one direct flight each way daily from LAX to Columbus. It did mean taking a “red-eye” overnight flight from LAX. I don’t like taking the “red-eye”, but it is a direct flight, it’s better than not going at all.
It started off of course in getting clearance from my doctors to insure there was no reason why I should make this kind of trip. No objections. I wouldn’t be the first, but would be one of the few who have taken on this kind of trip before and hopefully won’t be the last.
It is a pretty significant undertaking knowing that one must be connected to power at all times; whether it be batteries or direct power. I have 6 pairs of batteries which should keep me going for 24+ hours. So I felt everything should be OK time wise as long as all batteries are near max charge capacity. I also had to make sure I remembered to pack all supporting equipment, cables, emergency 24 hour battery, backup hand pump, portable charging unit, dressing supplies to perform sterile dressing changes. Check, check, double check.
Next step was to insure I could carry all my gear with me as carry-on. Since one never really knows if their luggage makes the same flight, or if a flight gets rerouted or aborted for some reason mid travel. I couldn’t live – literally- if the baggage with my medical gear were to be lost. My medical gear fills a standard carry on roll away, two small duffle bags, and a large “fanny pack”; and I also have a laptop along with reading materials, travel folio, etc. So I had a total of 4 carry-on’s and 1 personal item (fanny pack). So technically I had three extra carry-on’s for medical gear.
I had read everything on the airline’s website, and looked as though I should be in the clear, but LVAD’s and equipment are not listed as pre-approved or recognized handicap implements. I kept making my calls to the airline, and kept basically getting the same answer:”if it is medically necessary” and you can clear TSA, there will be no problem. So I moved on.
So moving on, I started researching and reading the information on TSA’s website. It contained the same “jibber jab” about exceptions for handicap individuals and only a general national 800 number. I called and explained my plight, received the same old thing. ‘Anything medically necessary will not be a problem, just be there 1.5 hours prior to your flight. Yeah Right! I finally was able to obtain the names of was responsible or in charge for TSA at both airports. Of course I was told their numbers were unpublished, after some coercion, I did receive a number, only to realize it was the airport general hone number. In the interim, I did try TSA email support and received the same generic “jibber jab” as I had already found on their website, so that was futile. I did persevere trying to track down the TSA contacts at the individual airports and eventually was able to get messages through to the contacts about my particular situation. They both were very courteous, understanding, and cooperative; seemed almost too good to be true.
Day before the flight: Delta advises on their website to call again 1-2 days in advance of your flight to re-advise them of your medical situation. It took a little doing to get someone to understand why I was call, but once I did – no problem – record updated.
Day of the flight: We arrive at the airport 3.5 hours early. I stopped at the Delta counter checking my “checkable” luggage. I once again wanted to make sure my record was marked so I could pre-board as my carry-on’s did not need to end up in the opposite end of the plane from where I was seated. All OK.
Now the scary part, will I pass muster at TSA? First they greeted me asking how many were traveling with me as they eyed all the carry-on baggage I had, and I said just 1. I know he would be surprised so I immediately into an explanation of my medical situation and requirements and asked for a supervisor. To my amazement, the advisor had been sent an email that morning advising him of my arrival and how to address/inspect my carry-on’s. It did take a little while for them to inspect everything- but there was a lot of stuff, BUT it go very smooth. I know there are horror stories out there that may or may not have happened, or should or should not have happened; but on my trip this time, they did a superb job. THANKS TSA!
Well we had plenty of time to kill, so we went and had a martini to celebrate what was starting off as a smooth trip. Thank God.
Now, on to the gate for my last pre-board check-in with Delta, my last threshold. Met the attendant at the gate and started to explain my situation and she stopped me before I could even utter my name. Stop – wait – I know , I know, your name is……..you have a memo record a mile long. We are already aware of your situation. I explained a couple of things and off we went to pre-board. Thank you DELTA!
So either I made a real pain in the “arse” of myself, or all the preparations paid off. I used to be a very frequent business travel and I do understand how flight schedules can go astray for any number of reasons and ruin a trip. However, I am most thankful to those at Delta(especially Corine!) and TSA for making the start of this trip smoother than I could have ever imagined. I expected the worst, but got the best. Unfortunately, things do not get to always work out this well, but this time they did. THANKS to all those who helped get my vacation off to a good start.
More to come,
Namaste,
Saturday, August 9, 2008
O! for a horse with wings!
O! for a horse with wings! ~William Shakespeare, Cymbeline
Log date: Wednesday August 6, 2008
I know it would be easier to fly on a horse with wings, especially with today’s security restrictions, luggage restrictions, etc. Now will I be able to fly…….
Not trying to be obsessive compulsive or anything, this entry is pretty much a continuation of my activities leading up to my first flight with an LVAD. Delta has been notified. LAX (Los Angeles International) has been notified and Columbus International has been notified. My LVAD coordinator has even been in touch with Ohio State’s cardiology department to arrange a local emergency contact person as an authorized LVAD support center should I encounter a problem while in Columbus. Not that I am anticipating an emergency of any kind, I have been know not to follow the rules so well, therefore one never knows what may happen in the world of “could”. I still cannot imagine a better medical support team than what I have.
I think I have mentioned I have assembled several copies of my LVAD, Travel, Emergency Notebook which continues my cardiologists release, explicit guidelines for emergencies, contacts here and Columbus, travel itinerary, hotel info, TSA contacts in both locations, medical equipment lists with pictures and descriptions, patient reference guide, etc. If there is document that has anything to do with this trip with LVAD, it is in these notebooks. They were a lot of work, but hopefully it will head off any issues or potential complications regarding me, my gear, etc.
.
I had my annual checkup late last week and today, I had my pre-flight checkup and all is working well, my labs were great, I have managed to loose a few pounds, blood pressure good, pulse OK. OHHHH – and this served as my early 12 month follow-up for having the LVAD implanted. My Cardiothoracic surgeon spent nearly 45 minutes in our consultation, I was shocked. But we reviewed everything from my trip details to the fact that I am probably at the halfway point for the life of the particular generation LVAD implanted in me. The next generation (LVAD Heartmate II) hopefully will be approved for “destination therapy” by the time mine needs replacing (it has already been approved for “bridge to transplant” and “bridge to recovery therapy”). The Heartmate II should last 4 to 5 times longer than the current model I have.
Back to my doctors’ visit, I also have been taken off of coumadin therapy. Not that coumadin is that horrible to deal with, but you really have to watch your diet and be consistent about taking your medications, etc. in order effectively manage your anticoagulant performance level. So I can at least take one thing off my plate!
There are a couple of other tests like a 2-D echo I need to do, but will schedule those when I return. Otherwise a great checkup and am glad to finally have all my documentation in order for the trip.
Otherwise, life is pretty good. Assuming all goes well on this trip; I will start planning a trip to see my sister in Pensacola and shop for a motorcycle. I am not in a rush on the motorcycle as they are selling at a premium now with the gas crisis, but hope to buy one by the end of the year. I have thought of other things I would like to do, but haven’t committed to them yet. I have thought about doing some volunteer work of some sort and perhaps get certified as a personal trainer. I like working out and am fairly knowledgeable about the body and the gym. I have especially learned a lot in reference to my medical condition and exercise. This is something that the average trainer would have experience with.
I guess what interests me about being a fitness trainer is that many folks struggle with getting into or back to an exercise regiment after having a major cardiac event or a serious illness. I would never try to pass myself off as a substitute for a medically sponsored Cardiac Therapy program, but I think I could offer fitness training that is a little more than just fitness training, but training that recognizes healing and growth that must occur on levels other than just the physical. I know for me, it has been very mental, emotional, and spiritual like journey. And like life the journey of recovery is on going. It is not like a diet you go on for awhile to loose weight and then return to your old ways and think it will stay off. WRONG! You have to grow your life to match your desired goal. Whether this to attain a certain weight, or level of fitness, etc.; it all requires permanent changes if it is going to last.
Another thing I have learned is one has to take change gradually. If you try to change it all at once, there frequently are complications. With exercise, it could be injury; with diet/weight change it could be unmanageable cravings that lead to an eating binge. We as human beings do have an incredible capacity to be self indulgent, but we also have an even greater ability to change, adapt, grow, love and improve as our life proceeds if only we will recognize and work with it. I am still working with “it” as a “work in progress”. I don’t believe I will ever be finished; but I will have the opportunity to work on it as long as my little “energizer bunnies” keep my ticker ticking.
Working on life a beat at a time……
Log date: Wednesday August 6, 2008
I know it would be easier to fly on a horse with wings, especially with today’s security restrictions, luggage restrictions, etc. Now will I be able to fly…….
Not trying to be obsessive compulsive or anything, this entry is pretty much a continuation of my activities leading up to my first flight with an LVAD. Delta has been notified. LAX (Los Angeles International) has been notified and Columbus International has been notified. My LVAD coordinator has even been in touch with Ohio State’s cardiology department to arrange a local emergency contact person as an authorized LVAD support center should I encounter a problem while in Columbus. Not that I am anticipating an emergency of any kind, I have been know not to follow the rules so well, therefore one never knows what may happen in the world of “could”. I still cannot imagine a better medical support team than what I have.
I think I have mentioned I have assembled several copies of my LVAD, Travel, Emergency Notebook which continues my cardiologists release, explicit guidelines for emergencies, contacts here and Columbus, travel itinerary, hotel info, TSA contacts in both locations, medical equipment lists with pictures and descriptions, patient reference guide, etc. If there is document that has anything to do with this trip with LVAD, it is in these notebooks. They were a lot of work, but hopefully it will head off any issues or potential complications regarding me, my gear, etc.
.
I had my annual checkup late last week and today, I had my pre-flight checkup and all is working well, my labs were great, I have managed to loose a few pounds, blood pressure good, pulse OK. OHHHH – and this served as my early 12 month follow-up for having the LVAD implanted. My Cardiothoracic surgeon spent nearly 45 minutes in our consultation, I was shocked. But we reviewed everything from my trip details to the fact that I am probably at the halfway point for the life of the particular generation LVAD implanted in me. The next generation (LVAD Heartmate II) hopefully will be approved for “destination therapy” by the time mine needs replacing (it has already been approved for “bridge to transplant” and “bridge to recovery therapy”). The Heartmate II should last 4 to 5 times longer than the current model I have.
Back to my doctors’ visit, I also have been taken off of coumadin therapy. Not that coumadin is that horrible to deal with, but you really have to watch your diet and be consistent about taking your medications, etc. in order effectively manage your anticoagulant performance level. So I can at least take one thing off my plate!
There are a couple of other tests like a 2-D echo I need to do, but will schedule those when I return. Otherwise a great checkup and am glad to finally have all my documentation in order for the trip.
Otherwise, life is pretty good. Assuming all goes well on this trip; I will start planning a trip to see my sister in Pensacola and shop for a motorcycle. I am not in a rush on the motorcycle as they are selling at a premium now with the gas crisis, but hope to buy one by the end of the year. I have thought of other things I would like to do, but haven’t committed to them yet. I have thought about doing some volunteer work of some sort and perhaps get certified as a personal trainer. I like working out and am fairly knowledgeable about the body and the gym. I have especially learned a lot in reference to my medical condition and exercise. This is something that the average trainer would have experience with.
I guess what interests me about being a fitness trainer is that many folks struggle with getting into or back to an exercise regiment after having a major cardiac event or a serious illness. I would never try to pass myself off as a substitute for a medically sponsored Cardiac Therapy program, but I think I could offer fitness training that is a little more than just fitness training, but training that recognizes healing and growth that must occur on levels other than just the physical. I know for me, it has been very mental, emotional, and spiritual like journey. And like life the journey of recovery is on going. It is not like a diet you go on for awhile to loose weight and then return to your old ways and think it will stay off. WRONG! You have to grow your life to match your desired goal. Whether this to attain a certain weight, or level of fitness, etc.; it all requires permanent changes if it is going to last.
Another thing I have learned is one has to take change gradually. If you try to change it all at once, there frequently are complications. With exercise, it could be injury; with diet/weight change it could be unmanageable cravings that lead to an eating binge. We as human beings do have an incredible capacity to be self indulgent, but we also have an even greater ability to change, adapt, grow, love and improve as our life proceeds if only we will recognize and work with it. I am still working with “it” as a “work in progress”. I don’t believe I will ever be finished; but I will have the opportunity to work on it as long as my little “energizer bunnies” keep my ticker ticking.
Working on life a beat at a time……
Wednesday, August 6, 2008
Flying with LVAD #2
Well in a week, I fly. I think I have all my ducks in a row to make security and the flight as uneventful as possible. I am excited and nervous. I really don’t consider flying a big deal after all I have been on 100’s of flights on all kinds of planes from a 2-seater bi-plane owned by a friend to those international wide bodies like the Boeing 777 or 787. I never have felt unsafe flying although looking back at 9/11 and other flight safety and pilot/issues uncovered in recent years; I probably should have been afraid.
I don’t even seem too anxious over dealing with security/TSA. A friend told me that recently he in the security area where there was a separate line for passengers with medical inserts or implants to accommodate the different security procedures required. I hope for the best, but will not be surprised if my patience is challenged through the process. What comes to mind more is that this symbolically represents a certain level of freedom that I might again be able to enjoy. Otherwise, I will have to be like Whoopi (Goldberg) and only travel by vehicle (car, bus, van, etc.). Not that that is all bad, but it can be a bit limiting, not to speak of the cost of gas these days and being time intensive. I would just like to travel a bit; now that my health seems to be back in order for the most part. There is my family and friends I would like to return visits with who have been so supportive through my recovery. It is funny the little things we take for granted or that don’t occur to you when things change in your life. I had an invitation to go boating in Marina Delray this past weekend, and I didn’t even think about it, I just said yes. This was someone I had not met in person before, so he had no clue as to the specifics of my having an LVAD, much less that I don’t need to be submersed in water (or salt water for that matter). It kind of took my breath away when it occurred to me. I have only been sailing or deep sea fishing a couple of times, I guess I won’t be adding to that count.
A sudden chill went down my back about what other things would be of equal or similar risk. See there is a tube that exits from my stomach and connects to my controller (a mini computer) and then to my power source (whether it be batteries or to direct power via a tether). It also connects to an exhaust air vent-filter. The filter and tube provide the air source for activating the LVAD pump’s pull and push canister for moving my blood. Should water or various chemicals penetrate the filter, it would definitely have adverse effects./ Not only is this device electric, but anything sucked in the air vent filter could penetrate the bearings; either causing malfunction or excess wear (assuming everything hasn’t shorted out at this point. This could apply to everything from a spilled glass of water, a cocktail, a sudden thunderstorm without a coat or umbrella., or any situation where my chest/stomach were to become suddenly drenched.
I initially only thought it would mean no showers, no hot tubs, or swimming pools. But it really goes much further than that, my medical support staff gets nervous over how profusely I sweat when warm; well I can’t do much about that. So it just becomes another one of those things I must stay conscious of, just like a diabetic must monitor his/her diet closely in or to manage their blood sugar levels.
It really isn’t too bad – I am still here, just in a little bit different shape. This trip means a lot inwidening “my borders”. I am hoping all goes well!
I don’t even seem too anxious over dealing with security/TSA. A friend told me that recently he in the security area where there was a separate line for passengers with medical inserts or implants to accommodate the different security procedures required. I hope for the best, but will not be surprised if my patience is challenged through the process. What comes to mind more is that this symbolically represents a certain level of freedom that I might again be able to enjoy. Otherwise, I will have to be like Whoopi (Goldberg) and only travel by vehicle (car, bus, van, etc.). Not that that is all bad, but it can be a bit limiting, not to speak of the cost of gas these days and being time intensive. I would just like to travel a bit; now that my health seems to be back in order for the most part. There is my family and friends I would like to return visits with who have been so supportive through my recovery. It is funny the little things we take for granted or that don’t occur to you when things change in your life. I had an invitation to go boating in Marina Delray this past weekend, and I didn’t even think about it, I just said yes. This was someone I had not met in person before, so he had no clue as to the specifics of my having an LVAD, much less that I don’t need to be submersed in water (or salt water for that matter). It kind of took my breath away when it occurred to me. I have only been sailing or deep sea fishing a couple of times, I guess I won’t be adding to that count.
A sudden chill went down my back about what other things would be of equal or similar risk. See there is a tube that exits from my stomach and connects to my controller (a mini computer) and then to my power source (whether it be batteries or to direct power via a tether). It also connects to an exhaust air vent-filter. The filter and tube provide the air source for activating the LVAD pump’s pull and push canister for moving my blood. Should water or various chemicals penetrate the filter, it would definitely have adverse effects./ Not only is this device electric, but anything sucked in the air vent filter could penetrate the bearings; either causing malfunction or excess wear (assuming everything hasn’t shorted out at this point. This could apply to everything from a spilled glass of water, a cocktail, a sudden thunderstorm without a coat or umbrella., or any situation where my chest/stomach were to become suddenly drenched.
I initially only thought it would mean no showers, no hot tubs, or swimming pools. But it really goes much further than that, my medical support staff gets nervous over how profusely I sweat when warm; well I can’t do much about that. So it just becomes another one of those things I must stay conscious of, just like a diabetic must monitor his/her diet closely in or to manage their blood sugar levels.
It really isn’t too bad – I am still here, just in a little bit different shape. This trip means a lot inwidening “my borders”. I am hoping all goes well!
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