For You Are The Wind Beneath My Wings

For You Are The Wind Beneath My Wings
Bette Midler (I think?)
This week I turn 52 years of age and my LVAD is 13 months old. As I mentioned or pondered in my last entry, how does one measure time in our lives. I put it out that a day is about 129,600 beats a day. It becomes even more overwhelming when I think about it, a month (93,312,000), or a year 1,119,744,000). Wow, almost 1.2 billion beats for each and every year I have my LVAD. And yet life still comes to me a beat at a time. No faster, no slower; just one beat at a time. But, then it does for everybody – right? I just have a little electric “engine that could” making sure my beat goes on.
So enough the waxing metaphorically, I wouldn’t want anybody thinking that I am no grounded soundly in reality.
I am certainly am not of the age to be considered young, and I don’t think of myself as old, just somewhere in between. I will admit there I times I feel old, very old, but I don’t really know what old is for me now that I have an LVAD that handles 80+% of my hearts workload. It is not an artificial heart, but it is the closest thing available. I sometimes describe it as one to greatly simply defining it to folks when asked. It really is like I am out there on the medical frontier.
I know another patient here in LA who has had his for nearly 18 months. Replacement for him will be in the near future. But reason for having his LVAD is different than my own. He has cancer, and it is his second time around. He really is a fighter and a survivor as his battle is greater than mine and he just keeps marching on, each day a gift, each day, and one more than yesterday. As we both have said, every day is different; handling it is unique; day at a time, minute at a time, and yes sometimes a moment at a time.
In talking with him, we do have very similar philosophies and manage from somewhere deep within as well as all the outside support do make it for another day, another week, who knows how long. He just takes what life offers. I try to focus and do that, but it is not always easy.
Gee I do like metaphors and quoting things I read or hear that inspire me. I will admit I am watching IDOL as I am writing this and there are so many well written songs about living in the “moment”. I just listened to a performance by Queen Emily singing “One Moment in Time” ( made popular by Whitney Houston). It makes me think about just how many more moments LVAD has given me. I was able to celebrate my partner’s (Don) 60th birthday and do not se a problem celebrating his 61st and hopefully quite a few to follow. Don and I celebrated our relationship of 16 years and plan to marry this fall and I have now celebrated two birthdays myself.
I probably ponder too much issue of about life and time. “It is better to read a little and ponder a lot than to read a lot and ponder a little” (Dennis Parson Murkitt). I do spend a lot of time reading and listening, so maybe I don’t ponder so much. The LVAD has been and is a blessing, but life’s moments should be treasured even more. One of my favorites is when I wake in the night to discover my lover’s arm holding me or when he wakes me in the morning with a fresh cup of coffee. Those moments are always worth every day.
So as I celebrate my birthday, there were moments. A friend calling out of the blue, discovering a box of chocolates at my front door; and going to lunch with a good friend with no rush, no hurry, actually somewhat spontaneous. I guess I wish there was a little more spontaneity in my life, but I do have to preplan to a certain extent. Today I forgot my emergency/battery bag. I wasn’t too worried as I put fresh batteries in prior to going out for lunch…..but what if? I did make it without incident, thank God. It was foolish not to return as soon as I discovered I was without them, but I felt relatively secure I would make it home in plenty of time after lunch, after all the batteries usually last well over 4 hours…
Very fortunate indeed as I did make it home without event. Regardless, another moment was created. So regardless of how one measures time in a life, by moment, my heartbeat, or by minute; it is always one more than we had.
Namasté

One Hundred Twenty Nine Thousand Six LVAD Beats

One Hundred Twenty Nine Thousand Six LVAD Beats
Is how I measure a DAY!
Thump, thump, wisp, wisp; Thump, thump, wisp, wisp; Thump, thump, wisp,wisp….. My LVAD just keeps pumping away; somewhere in the neighborhood of One Hundred Twenty Nine Thousand Six Hundred Minutes – EVERYDAY! It is definitely audible in a quiet room and something I can always feel working, almost regardless of the activity. Its beat is pretty strong, think of how you feel your heart - when you have been scared shitless, or run to catch a plane. I am not complaining, just a frustration. I saw the theatrical product of Dolly Pardon’s “9 to 5”. The thought crossed my mind of what if my LVAD only needed to run “9 to 5”. Of course that would only be 43,200 beats. Unfortunately it must work relentlessly 24 hours per day. Thump, thump, wisp, wisp; Thump, thump, wisp, wisp; Thump, thump, wisp, wisp…… on it goes.
Today was a beautiful day. But because of my LVAD, I am not only still here; but I had a fairly typical Sunday as compared to before all this heart failure business. We rose early so we could watch Meet The Press. Actually this is something I never used to do as I never really had or made the time to keep up with politics. So I can say LVAD has definitely allowed me to do things had wished I could do.
Then we went to our little Farmers Market in Studio City. It is just around the corner so to speak. Afterwards, it is off the Trader Joe’s and other errands. Got home and put a big o’ kettle of red beans and rice on the stove. (Oh I miss going to New Orleans) I don’t really know how to make a little bit of anything as it never is quite right until the kettle is full. I guess it is a carryover from my childhood where dinner was “supper” and having neighbors over to eat was not un common (or vica versa) just an opportunity to share our table and our lives. (Of course we had a big ole freezer for leftovers also.)
Anyway, from the kitchen I proceeded to work in my patio garden. We live in a condo, so the patio is the only garden I have – BUT IT HAS BECOME A JUNGLE OUT THERE. I start cuttings for friends, dividing other plants, deadheading flowers to promote more flowers. I even have 8 hummingbird feeders. A friend got me started by giving me a very nice blown glass feeder for my birthday a couple of years ago. Now I just keep adding to the collection. The funny thing is the hummingbirds seem to like the cheep tacky plastic feeders the best! Go figure.
It is sort of my little sanctuary. It has moon flowers, cardinal vine, cypress vines, begonias, impatiens, cannas, dahlias, a couple of roses, and yellow and red angels trumpet. And to think this patio is only the width of our condo (about23 feet) and about 6 or 7 feet deep. I barely have room for a chair and small table. It is nice to go out and relax under the shade of a makeshift arbor. It is very quiet where we live and you can almost forget that we live in the “big city”. Quiet enough I can still hear Thump, thump, wisp, wisp; Thump, thump, wisp, wisp; Thump, thump, wisp, wisp…… It never quite goes away.
All in all, it really was a great day. I even went and soaked my legs in the hot tub. I cannot get total emerged, but even going mid thigh was real treat. I know it is risky. If I slide and got the batteries or my controller wet, it would sort of be “all she wrote”. But life is all about defining the risk one is willing to take in almost every aspect of our lives. Flying, driving, living, getting out of bed in morning; they all have some element of risk.
I, my partner, and my family went for the risk of having this LVAD implant. And I will be forever grateful for that decision and their support of my living and my continued recovery. But I have made it, I survived and am alive. Thump, thump, wisp,wisp; Thump, thump, wisp, wisp; Thump, thump, wisp, wisp……it will always serve as a reminder that I am alive. The rest is up to me to define or determine what risks I live with. When I think that with the flip of a switch or my device fails for some mechanical reason, my LVAD could stop. AND SO MY LIFE WOULD PROBABLY END ALSO.
So I do the things I want to do as long as my stamina holds up and I feel like I can control the risk. There now are some things I will not do when I am alone. It is not that I feel I couldn’t do them on my own, but if………I actually had one of the situations not long ago after coming home. I learned I can’t just ABSENTMINDEDLY do whatever action/thought that comes to mind or presents itself in my life.
I remember about 6 weeks after I came home from the hospital I did have one of those gotcha moments. I was in the living room and saw that one of the vertical blind slats had come down. I thought to myself, no big deal, I can re-hang it. Of course the traverse rod was not in reach from the floor so I grab the nearest chair to stand on – a spongy one at that. I know I have done this several times before. So I stood on the chair – and GOTCHA! I lost my balance and fell head first on the floor. I was bleeding, LVAD controller alarm was sounding, can I get up, what do I do? As much as had preiosly walked through scenarios of an emergency, it never totally prepares you. Every situation is different and I know I must assess the situation immediately, Do I need help, how much help. Do I need an ambulance? Lord I really didn’t want to have to call 911.
I could get up and discover that I had broken one of the battery holsters and I could connect only one of the batteries! Fortunately there are two batteries that operate in tandem, so it was still working from the one battery. But it does mean I need to go upstairs and get on my power tether of my PBU (power base unit). I think need to attend to the cut on head as it was bleeding profusely.
My first concern was to stop the bleeding. My head really hurt, but I hit a Mexican tile floor pretty hard. So I put ice in a towel and applied pressure to my head…… the LVAD alarm is still sounding. I thought, OK I have to make plan of things I need to do. The bleeding does not seem to be slowing down as I feel the warm trail of blood curling around my neck.
I realize I need more help than I can provide myself. I tried my partner’s cell phone, but it is here in the kitchen. OH GOD….I realize I really do need to call 911! Something I really didn’t relish doing but it had to be done. I certainly was not successful in trying to stabilize my situation. I was still bleeding profusely and I need to get hooked up to the LVAD power supply upstairs. I have to call 911. I don’t want them breaking the front door open…..oh but the patio door is open, only the screen door is closed. OK.
So I go upstairs, hook up to my PBU….the alarm goes silent. Thanks God, I was really getting scared that I may have damaged the LVAD from the fall, but all seems to be fine now. Now, call 911, there is blood everywhere, it is not clotting, oh it hurts. The 911 operator was great, she stayed on the phone until the ambulance arrived. I had to explain my special circumstances. The ambulance must be able to provide 120 volt for my power supply to hook up. It and all my gear must go with me. I am still bleeding. I will admit the emergency folks and fireman were extremely attentive. I explained my LVAD setup. They managed to carry me and my gear (and all my med’s, batteries, etc. l the way down to the ambulance – over two flights – 37 stairs to be exact.
So off to the hospital we go. I couldn’t convince them to take me to Cedars and ended up at Sherman OAKS. So I give another class on my LVAD to their emergency team. Of course they have never seen it before, so I sort of was the patient on parade. That’s OK, I actually do not mind talking about the LVAD. Meanwhile they had to pump 4 pints of blood in me. (We won’t discuss what a mess the house was left in as I had been in almost every area and bleeding apparently heavier than I thought. They ended up stapling my head, getting me stabilized and then transferred to Cedars Sinai Hospital. I was in the hospital for 4 days and release. Although I did get a stern scolding on checkout! I was lucky, lucky indeed!
Fortunately I did not have a concussion. I also never lost consciousness or an overwhelming sense of panic. I think I stayed relatively calm through the whole thing. But…… what if I had lost consciousness at any point before calling 911? I probably would not be alive. Instead, my partner would have come found me bled out on the floor. I don’t need to have someone else around at all times. But I certainly do if I am doing any major physical activity where I could fall. (I won’t even change a light switch Don or a good friend here.
Things very easily could have turned out different. It certainly was another life changing event that remolded my way of approaching things. I think about what could go awry and I try to be prepared. Do I have enough spare batteries with me? Do I have my cell phone? Am I up to the task physically? What impact will the activity have on my heart/LVAD? How can I minimize a negative outcome?
I do still push limits or the line in the sand as they say. I probably am a little more independent and self sufficient than other LVAD Destination Therapy recipients. I workout at the gym, I ride my bike. I do drive by myself. I could be out of the house for a good part of the day, going to the doctor, running errands, or take my dog for a long walk. If I am home, I probably go up and down the stairs 20-30 times a day. It doesn’t matter which floor I am on, I always seem to want or need something and it is on another floor. Oh well the steps are good for my heart right? I think so.
So things are indeed different and probably will be for the foreseeable future. My LVAD will need to be replaced in the next year or so, but the next generation promises to be quieter and probably will last around 7-10 years verses the 2 years or so for this model. It is also a rotary desire, so I will no longer have a pulse, no traditional method to measure my “equivalent heart rate” or blood pressure. It will be starting a new chapter and relearning what my parameters will be as I adapt to another version of life.

WHERE AM I GOING WITH MY LVAD, WHERE ARE WE GOING AS A NATION?????

I won’t apologize for my last column being about politics, nor will I apologize for continuing to make reference to the ongoing issues with the upcoming election or the incredible unforgivable failures of our government. Many of our government’s failures may seem small, but when you add them all up it shows what a failure our current administration has been as well as a direction we cannot afford to continue. Besides, repeated failures do point to a trend we can’t allow to continue.
I am starting another blog where I will continue to share my political views and concerns regarding the election and our current administration. It will cost you as I certainly will be throwing in my two cents worth.
The other blog will be at: http://josh-politics.blogspot.com/
I will be posting to this site shortly.
Now back to life with “MY LVAD”. I went to a new support group for LVAD recipients this past week. It has been going for about 3 or 4 months with monthly meetings. This last meeting had the largest number of attendees (it includes both past, current and future recipients as well as their caregivers). It is a monumental task for both patients and caregivers to take on this procedure. Adapting to living with an LVAD calls for a lot from the recipient and caregiver, friends, and family.
I was one of two recipients with LVAD as destination therapy, everyone else were caregivers or bridge to transplant. I was surprised how different or how far I have come verses those who are only a 2 or three months post implantation. They still are adapting to living on a power cable or batteries. And most are never left alone. I actually spent two weeks by myself this summer while my partner was away on a school trip. I drove alone, did my shopping, and worked on a couple of home projects. The group meeting certainly raised my awareness of the progress I have made. Most were present with their caregivers as they do not drive alone yet. Although driving, cycling, riding a motorcycle, dune buggy riding is possible allthough not quite encouraged or recommended by our cardiologists, there are those of us who are “MAVORIC ENOUGH” to push or break the barriers of approved or recommended activities. (It is a shame that McCain and Palin have yet to prove themselves as real stewards of change and reform; he has had 6 terms as a senator failing to show reform; and Palin has only pursued her own interests in her short career in politics. I have yet to see them as MAVERICs. OK, I know enough of my stump fodder.)
Today, we cleaned the garage. It is almost like the commercial where a lady has to user her keyless remote to locate her car in the garage. Our garage is not far from that. There is no way we could get two cars in our garage even if they were compacts!). My partner has two artificial shoulders (and an artificial hip), so between us we have enough titanium, we could retire! Anyway, he can’t really lift things over his head. I am not supposed to either, both because of the LVAD tubing in my gut, but also because I have a biventricular pacemaker that has three metal leads going through my chest to my heart. But then, how often have I followed the rules (not very….)
Fortunately it was not too hot today. That is not to say I didn’t work up a sweat, I did. I setup 2 metal “angle iron” type shelves. Then I started going through boxes that haven’t been looked at since we moved here (13 years ago). Old shoes, commemorative T-shirts, Mardi-Gras beads, I couldn’t believe the crap that had been sitting down there. My partner, Don, is a school teacher and just moved from teaching the 3rd grade to teaching the 2nd grade. So we had all kinds of boxes with teaching materials for the 3rd grade plus new materials we have been acquiring for the 2nd grade. Well we only made it have way through. I did all the lifting, surprise…..surprise. It really wasn’t problem except I am beat and can feel my body getting stiff. I need to buy probably about 4 more shelving units to finish the job. Hopefully it will look like someone civilized actually lives here soon.
So it has been a busy long day, but the positive thing is I was able to do it. It would be tough doing it every day though. Maybe in the next support group meeting, I will try and share more about slowly extending ones’ limits. I would say that if I was conscious enough to answer what I thought I would be able to do now a year later after my LVAD implant.; I tell you it certainly wouldn’t have included cleaning out the garage, pushing, lifting boxes weighing 30, 40, maybe even 50#’s. I can do a lot of living with my LVAD.
When I inventory the list of things I can do, it is pretty long. Gardening, walking the dog (Tully – our “parti” Miniature Schnauzer who is a little hyperactive), driving, cycling, work at the gym if I choose. In spite of the exit tube in my gut, I can now (finally) lay down on my left and right sides, or flat on my stomach. I can touch my toes; do sit-ups, crunches, and pushups. I know doing these things may not seem like much to the average “jo”, but they really are significant accomplishments for someone who had to learn how to get out of bed again or how to walk again. Looking back it is really hard to believe.
I remember my physical therapist. He would make me do my exercises even when I didn’t feel like it, but also who would slow me down when I got to aggressive. I must thank him for his incredible drive, enthusiasm, and patience. Little did he know that his therapy would serve as a foundation for what I am now capable of and so much more.
There are a number of things I cannot do that are a struggle to accept. In particular, becoming immersed in water (tub, show, hot tub, swimming, snorkeling or diving) is off limits with the version LVAD I have because of the exit tube in my gut via an “open wound” which connects to the external electrical support and the bladder air exchange. I guess what really made me think about this particular limitation was finding my old snorkeling gear. I remember my gear was not cheap. I didn’t throw them out as I have the foolish notion that someday, there will be a better solution LVAD that would allow me to swim and get wet….or enjoy a plain old fashion shower. Mmmmmm……
I am not complaining as I am doing more than I ever thought possible. I do get tired and need to take frequent breaks, but the fact stands, I am alive and I can still live life! And perhaps I do have something to share that might help someone else discover that recovery has many horizons, and you just have to cross them carefully and one at a time. I have crossed many, but I know my journey will have many more.
Living with LVAD, even with it must do’s and don’ts has brought me further than I ever thought possible. For those of you in the early stages of recovery, take your time as it does get better! Pursue something new every day, another step, another 10, sit up longer, or an extra smile to your caregiver(s). Even go watch a sunrise or sunset as you have had both occur in your life (or seen it happen in a life as caregiver)– but see mother nature doing it. Living with LVAD day to day can seem overwhelming, but it is manageable. Notice how Mother Nature continues to do it every day and we can do it too!
Namastè
Two roads diverged in a wood, and I--I took the one less traveled by,And that has made all the difference. (Robert Frost)

Survive LVAD for a year for this!

Survive LVAD for a year for this!
I had told myself that the primary reason for this blog was to document my journey with my LVAD implant, pacemaker, and AIDS, etc; but for this entry I have to step outside of that primary objective.

I DID NOT SURVIVE THIS LAST YEAR TO LOOK FORWARD TO ANOTHER 4 YEARS OF MCBUSHIAN POLITICS.

Let's see, by my last blog post, that would be 2,098,400 minutes for a 4 year term. Over 2 MILLION MINUTES!

Before McCain picked his running mate, I was not too worried about McCain as having a significant chance of beating the democrats. ( I actually voted for Hillary, but will take Obama over McCain any day.) But now after picking Palin as his running mate and the response in the polls, I now fear that the American public maybe letting him pull the wool over their eyes.
I will give him credit for his service to this country in the military, most specifically his service in Vietnam. (My older brother had multiple tours of duty in Vietnam and I wouldn't want him for president, sorry brother.) Nor will I discredit his years served in the senate for his state, assuming he has represented their interests fairly. But these two facts do not add up to him being the best candidate for president in these times. After the last 8 years this country and its citizens are in the worst financial shape in as many decades. The country and the average citizen are in the deepest debt ever in American history. We have the lowest respect politically globally in at least as many decades.
Then let’s look at his choice of running mates, Sarah Palin. In everything I have read that didn’t come from the McCain campaign; I have had a difficult time finding the integrity of his choice or within the candidate herself that we as citizens should expect. In her short time in politics, she has shown to be an astute opportunist. She definitely knows how to manipulate the system to her benefit. She may have said the final work of “no thank you” to the bridge to nowhere when it was popular, but she was a strong supporter prior to that. She may say she is against earmarks now, but it certainly did not stop her from getting 27 million dollars in earmarks when she was mayor.
She touts fiscal conservatism, but she assumed the office of mayor for Wasilla, Alaska; a town of 7000 with $0 debt and left it with more than $20 million in debt. (That is almost 3,000 dollars for every man, women, and child of the town of Wasilla!) Is this the sort of fiscal experience we are looking for?
There are many other untruths uttered by her. However that brings me back to wonder how sound a decision was it for McCain to select her out of a field of significantly more qualified and capable folks, men and WOMEN. Or was this one of those brain farts we come to expect as we grow old. (I know, I have them to; but do we want this as a shining quality in the man who will be taking that call at 3:00 A.M.?)
In the last few days we have received announcements of unemployment rising again up to 6.1% (6th month of consecutive increases to a 5 year HIGH). The federal Government has assumed control of Fannie Mae and Freddy Mac (and therefore the debt and securities – 5 trillion dollars – I forget how many ZERO’s that is behind the 5!, but it works out to about $1,600(CORRECTION $16,000) per US citizen - I know i don't need another bill for $1,600...(CORRECTION $16,000). Then to allow the CEO's of Fannie Mae and Freddy Mac to walk away with millions of dollars in compensation bonuses! That we have spent more on the war in Iraq than it would take to shore up our education and social security programs!
I do consider myself a very spiritual person; but to think that the religious right may have undue influence in a country that prides itself with separation of church and state and at the same time providing for freedom of religion, this does not represent the rights guaranteed us under the U.S. Constitution. They have made it clear they do not believe that all men (women too) are created equal in the eyes of GOD. It used to be that it was only right for a white man to marry a white woman. And in the unwritten rules on top of that: catholic must mary a catholic, Jew to Jew, protestant to protestant, Negro to Negro, Irish to Irish, Chinese to Chinese, etc…..there were so many unwritten rules as to who it was appropriate to love whom. Do we want to go back to this way of thinking, where women did not have the right to choose whether early stage abortion was right for them? After all it is their body! Do we really want a government that continues to erode at our right to our privacy? Our telephones, our email, our BEDROOM?

I have to say proudly that I will be voting Obama & Biden!

If you want more details on their “SPECIFICS”, please use the following link for DETAILS.
http://www.barackobama.com/issues/
The Obama/Biden ticket may not be perfect(is there such a thing?), it is a hell of a lot better than 4 more years of what we have had for the last 8 years. We do need a change from the Republican Party’s way of doing things. To flip flop and/or lie about what they stand for, unable to decide what the important issues really are, to join the reform and change platform only after picking an inexperienced vice presidential candidate that has already been caught in numerous lies and half truths about her stance on reform; I mean what is it they really stand for? I don’t know about you, but when I was brought up, there was no such thing as a half truth, it was either a LIE or it is the truth.
OBAMA/BIDEN – THE ONLY REAL CHOICE?
CIVIL RIGHTS: To continue breaking thru the barriers that hinder true equality of all citizens.
DEFENSE: To insure proper support of our troops with the right equipment and comparable pay as in the private, and make sure they are properly deployed in fighting the RIGHT battles and war(s).
DISABILITIES: "We must build a world free of unnecessary barriers, stereotypes, and discrimination .... policies must be developed, attitudes must be shaped, and buildings and organizations must be designed to ensure that everyone has a chance to get the education they need and live independently as full citizens in their communities." (Direct from website)
ECONOMY: If we all haven’t been feeling this one in the pocket book, YOU MAKE TO MUCH MONEY. Not that you should be punished for that, but when I made more, I gave more. Now that I am on disability, it is less. And as the economy worsens, it will become more and more difficult. I don’t believe it is fair or right for us to continue giving tax breaks to corporations that seems to be having no problem in improving their bottom line; THIS SHOULD NOT BE AT THE EXPENSE OF THE AMERICAN CITIZEN. I have lived both sides of the coin with regard to wealth, and still feel it is unfair to provide tax breaks that are weighted towards the “rich”. Defining rich or wealthy as those making over $250,000 annually is still awfully wealthy. If I only still made over a $100,000 annually would be a treat in my book!
EDUCATION: What can I say, we have dropped to a tie with Mexico at 19th for the lowest high school graduation rate in the industrialized world. Is this something we can be proud of? No child left behind has only given us more kids who if they make it to graduation, cannot read or write at an 8th grade level or better. Then again, is graduating at an 8th grade level what we should be proud of. We must have proper funding, and consistent and better ways of measuring performance of both teachers and students.
ENERGY AND ENVIRONMENT: I don’t think Energy could be more important because of its fundamental impact on the Environment, the Economy, and just about every component of our daily lives. Obama has been a leader in the senate to establish a comprehensive energy policy that will support achieving energy independence.
There are many more details to the issues I have noted as well as many other issues and positions. They are detailed, comprehensive, and understandable by the average “jo” like you and me. And for those who think they are better than the average “jo”, then you certainly will have no problem.
All I know is history has proven to repeat itself! Democratic administrations have consistently outperformed republic administrations.
The scoreboard for the Democrats versus the Republicans so to speak:
--the economy has improved during democratic administrations
--number of citizens living in poverty declined by number and percent (except during Jimmy Carter)
--real growth averaged 4.09% for Democrats versus 2.75% for Republicans
--unemployment averaged 5.33% for Democrats versus 6.44% for Republicans
--inflation was lower on average (Dem – 3.81% versus Rep - 4.85%)
--the national debt was reduced or grew at a slower rate under the Democratic Administration
--the national debt took on more than twice the % of the Gross Domestic Product under the GOP on average versus Democrats (Dem-1.21% versus growing by more than 2.74% under the Republicans)
--unemployment rates dropped……
To see more, check out: Economic Performance Democrats vs Republicans.
The Republicans say they want to reduce government spending, but they have OUTSPENT Democrat administrations. “The federal government spent more under Republicans than Democrats (20.87% of gross domestic product, compared with 19.58%), and that remains true even if you exclude defense (13.76% for the Democrats; 14.97% for the Republicans).”( DO THE MATH by Michael Kinsley-Washington Post)
The McCain says he is the symbol of change, but has sided with Bush 90% of the time versus Obama only 50% of the time. Does that sound like change? I could be 200 pounds overweight, and say I lost 10 pounds and that I have changed. It is a start, but not a PATTERN of change we need for president.
Another republican administration will just mean more of the same. Change and reform is needed, and it must start from the bottom up as well as the top down. Therefore get out and support change from the top down by generating support from the bottom up……
VOTE THE OBAMA/BIDEN TICKET – CHANGE THAT WE CAN LIVE WITH!
For those in California, VOTE NO on PROPOSITION 8!
I WON’T APOLOGIZE FOR SOUNDING OFF POLITICALLY, but if I am going to survive life by having an LVAD, Pacemaker, and living with AIDS, I want to have a country that will survive as well.
Namasté

"Five Hundred Twenty-Five Thousand Six Hundred Minutes"

"Five Hundred Twenty-Five Thousand Six Hundred Minutes,
How do you measure- Measure a Year…….
Five Hundred Twenty-Five Thousand Six Hundred Minutes,
How Do You Measure - A Year In The Life?"

The play: RENT Song: Seasons Of Love

How does one measure a year, how does one know that you are living life to its fullest. I did see this play on Broadway a number of years ago and fell in love with it as I could certainly identify with quite a few elements of the show. Being a gay man, diagnosed with AIDS, having lost my first lover (of 10 years) of AIDS as well as many friends, episodes of fighting my own demons of drinking, etc., and struggling to find my own path or journey in life; I could and still can identify with many elements of this play. This truly was a remarkable play that pulls the audience into the desperate and the disparate but yet similar lives of its players.
Now that there are so many treatments for AIDS, a number of us have become long term survivors. For those who have become infected with HIV or diagnosed with AIDS have a much higher chance of being long term survivors and living pretty normal lives. This should not change our perspective of the danger this disease presents and the impact it makes on peoples’ lives. Globally, there are many who do not have access to the treatments available today that I have benefitted from. This disease is still ravaging the lives of people all over the world, including here in the USA. Research and application of treatments and disease prevention still needs to remain a top priority (among many priorities) we have today.
I have been blessed in being a long term survivor, and now suffer with another health challenge of a weak enlarged heart with cardiomyopathy. As with other long term AIDS survivors, other ailments of growing older come into play. The effect of living for years with AIDS, taking the various medications (often times somewhat toxic), does take its toll on the body and emotions. In particular: the liver, kidneys, and the heart.
For me, my cardiomyopathy has grown to advanced stage heart failure. I have been fortunate that treatment with an LVAD to support my heart has allowed my life to continue. Just recently I celebrated my one year anniversary with the LVAD implant and it does make me reflect on the fact that my life has been extended by over a year at this time, provided I am measuring it by time in the traditional sense. But, there are so many other dimensions to living or being alive.
As Rent just did its final performance on Broadway, it surely has been a tribute to not only the writer/composer, Jonathan Larson (who unfortunately died of an undiagnosed aortic aneurysm the night before the show opened), but to all people who have faced the adversities of life. It is a challenge for those who have AIDS, as well as anyone who faces a life altering disease; to unravel how to survive. Finding the inspiration or motivation to pursue life can takes on a very different effort. It takes more than just going with the flow. It means taking the journey of life with a different set of “wheels”.
The basic principles of living are the same just as two different vehicles generally operate the same; but it is different. For me it has made the difference of life verses almost certain death. Living with LVAD has been an adjustment. Besides the daily routine stuff that has been added to my life, it is something that I am always and constantly aware of. Feeling it beat in my chest far harder than my own heart ever beat. Listening to the wispy sound it makes through the exit tube filter outside my abdomen also serves as a constant reminder as well. Some find the sounds soothing and serve to remind them that they are alive. I guess that also could be said of the heart rate monitor when you are in the hospital. At times it still seems to be somewhat of an intrusion.
There will never be the quiet of the night or the golden silence achieved during in meditation. One’s mind or my mind anyway, is always running in a dual modality. One is whatever I might normally be thinking about. But the second is listening to the various sounds associated with the LVAD. Do they all seem normal? Is there any irregularity that I should be noticing? Should I be anxious, or can I relax that all is indeed OK and the LVAD will continue doing the job it supposed to.
“Can I get on a ladder to change a light bulb?”
“Is it OK to do this when I am alone?”
“Do I have sufficient batteries for the activity or trip I am about to take? How long will I be gone? What chance is there that my trip my take longer than planned?”
“Will the battery alarm go off at an inconvenient time (like at the movies, or in a theatre, or the symphony hall?” I have been chastised for the noise it makes even without the battery alarm! It does make me think twice about some things, but then I don’t want to give up these activities either.
A lot of the time I can shut this out, but those thoughts always seem to be running through the back of my mind. I will admit I do spend a lot of time at home. Sometimes it is just because it is easier or finances are tight. Other times I do want to get out but can’t decide what to do or don’t want to do it by myself. I guess there are lots of things I could do.
I could shop, but I don’t particularly like to just shop around unless there is something I need. Even when there is something I need, often times it is something I can get on the internet just as easily, at a better price, and not have to waste the gas.
Well I won’t bore you with my dribble any longer; I actually have a date for lunch. I am actually getting out of the house for awhile! It will be so nice.
So on to my journey of life,
Namasté

A Life Without Love Is Like a Year Without Summer

A life without love is like a year without summer.
Swedish Proverb quotes

This entry I dedicate to my lover of 17 years, Don.

Don, I love you dearly! (And thank you for the roses, they are beautiful).
Yesterday we celebrated our 17th anniversary. Just an ordinary day other than the AC compressor was out and it is 95 here in the valley of North LA. The heat sort of lent itself to a lazy day. It is funny how my LVAD anniversary is one day prior. So we got to celebrate two anniversaries this weekend. We didn’t do anything special as Don is working hard getting ready for the start of school.
It has been an interesting year especially since it includes my recovery from open heart implant surgery. The scar actually healed up quite nicely, you don’t see it unless you are looking for it. The scar from my central is actually more noticeable, I suppose it wouldn’t have been so if I hadn’t tried to pull it out a couple of times. To be honest, I don’t remember our anniversary last year. In fact, I remember little to nothing of the two months following the LVAD implantation. I know I was released from the hospital on October 17th. There are a few moments of my physical therapy, training on the management and care of the LVAD, and sterile dressing procedures. I am told I wouldn’t want to remember more as I actually was a pretty nasty patient for awhile. I hate hearing that, but not much I can do about it. I go to the hospital frequently and see them and they are just happy to see I have recovered so well.
The one thing I remember of the days I can remember, my partner Don was there every night. In fact he was there every single night I was in the hospital and all day many times (as was my sister while she was here). That is a lot of commitment as school was to start in a couple of days (he teaches 3rd grade), and we had a new puppy to be taken care of as well. What can I say but that he was terrific and I am so happy to have him in my life. I probably would not be here if he wasn’t.
A week or so prior to my surgery, we had gone to Las Vegas for a short get away. On the way back he could tell things were not right. My energy level was non-existent, I didn’t even gamble (this normally would be totally unheard of), and I was always short of breath. By the time we got home, he had made all the calls necessary to obtain the referrals necessary and appointments made as I drove. I had not even asked him to, I probably even had said “oh nothing is wrong; I am fine, just not sleeping well”. Boy, how much denial could I be in! I ended up not even making to my first doctor’s appointment before he felt he had to rush me to the emergency room. The rest is history.
So thanks to him and the cardiac surgical team for the LVAD, I am still here; alive, well, and back to trying to figure out life. I don’t take each day for granted or casually; but I do not pursue them very aggressively either. I feel like I am back to not knowing what I want to be when I grow up, especially not knowing how long I have to do it.
I guess that is where I get stuck. Not that any of us really knows how long we have; I only know that odds are, “statistically”, it is less. But how much time is an unknown that is lesser than another unknown? As far as studies go, every year is a milestone, but only the first 2 years have been studied. I am doing well; I am in good health considering; but not sufficient to return to work full time. I did a 3 hour lecture on Saturday and was just exhausted afterwards. I will admit it does not take a whole lot to get me tuckered.
I would like to do more with my partner, but that is a little awkward as he will not be retiring for 6 more years and being a school teacher is a demanding job. I do sometimes assist with special classroom projects, but wish I was doing more. I sort of feel that like of rambled in this entry today, and that I am spending my life rambling.
Well I am going to bring this to a close. I thank you Don for caring and loving me, even when I couldn’t reciprocate with my love to you. I love you dearly and appreciate every little thing (and the big things too) that you have done for me.
Namaste

ONE YEAR ANNIVERSARY WITH LVAD

"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

“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

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

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

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,

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……

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!

My First Flight With LVAD

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!

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

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