Hi everyone,
I certainly can’t say I am original in everything I say (I wish!), but there is so much that has already been said that just needs to be repeated, restated, or reinterpreted. I saw a remake of “A CHORUS LINE” at the Ahmanson Theatre here in Los Angeles. Although it received mixed reviews, I listened to it from a very different perspective than I did the first time I heard the soundtrack nearly 30 years ago. Michael Bennett deserves a lot of credit for capturing the plight of a dancer on Broadway in the audition process; besides, isn’t life just an audition? (Oops, I believe that is the title of Barbara Walter’s new autobiography. Well as a Carol Burnett and Julie Andrews based a special on some years ago, “It’s been done”.) Anyway, my point is if you couldn’t live anymore (as you know it), what would you do?
The first answer is obviously DIE. Sometimes that is indeed what happens. What if there are options, but they come with conditions? Many would presume to say “YES”! As the word “presume” indicates, that would be presumptive! There is are persons who would rather not. There have been books, movies, theatre, TV show episodes, etc. written or produced about both answers. You probably could find there are plenty of soldiers returning from war on both sides of the fence of this question/answer.
Science and medicine has come so far in enabling doctors to save our lives from under prevailing circumstances. Only the recipient of a successful life saving treatment can answer the question for their individual circumstance. There are loved ones who often jump at the solution that seems to preserve life. But, saving life does not always preserve it. I believe fortunately for me, in spite of having near “end stage” heart failure, receiving an LVAD(left ventricular assist device) saved my life and preserved it. I also believe an LVAD can save and preserve life in a high percentage of the folks who receive one whether it be for “bridge to transplant”, “bridge to recovery”, or “destination therapy”.
I am ineligible for transplant. The reason being I have AIDS and the medications would conflict (AIDS treatments work to improve one’s immunity, while transplants require medications to suppress one’s immunity to avoid transplant rejection). There are other complications that also can make one ineligible for heart transplants; including but not limited to some cancers, secondary organ failure, or other auto-immune diseases.
It also is statistically unlikely that my heart will recover sufficiently for it to serve as a “bridge to recovery” so the LVAD can be explanted (except to have it replaced). Depending on the study you read, only 7-20% recovers sufficiently to be explanted. Therefore, I fall in the “destination therapy” category. I still have hope that my heart could repair itself sufficiently to be explanted, but I am not going to sit on the couch waiting. I have a first generation LVAD Thoratec HEARTMATE XVE LVAS, which will probably wear out in 2 to 3 years. A newer model, HEARTMATE II, is anticipated will last 7 to 10 years. In time, technologies will continue to improve and treatments will be longer lasting. With any luck, my heart may mend itself so that I no longer require an LVAD.
So I am still alive and recovery is ongoing. About 5 months post-op I asked one of my cardiologists where do we go from here? His response was “you are there”. He said I will always live a semi-sedentary life style and not to expect much more. Well my reaction I guess is somewhat like having sand kicked in my face by the “beach bully”. I didn’t want to accept this as there had been so much more to my life before; and I wanted back any part I could manage to restore. It is not tough to accept that we have limitations; it is just tough acknowledging what some of the limitations may be. Fortunately most of my doctors have appreciated my desire to recover further, have been supportive and yet at the same time have reminded me I am sort of in uncharted waters. There is something about being a front runner that is exhilarating and yet risky. As a front runner in a race, one might worry about running out of steam prematurely; I worry about expecting too much out of my recovery. Do I have the fortitude to do all that I can?
For me to accept I would do little more than exist and maintain living a semi-sedentary life style was not going to be good enough, I felt like I had to push the line. If not just for me, it would be for those whose journey will follow. I remember struggling through my physical therapy, but I was always thinking it wouldn’t stay this way. Things did get better after awhile, but patience is not one of my virtues. Being one of the first with an LVAD as destination therapy, my doctors, VAD coordinator, and other hospital staff always made sure I had the best support for my recovery; by them and the home health care professionals they scheduled. Not that it was ever easy; they, my partner – Don, family, and friends helped make it as easy possible. I probably will be in recovery for life, but at least it is progressing for the better. I know l owe a lot of gratitude to those who helped me; then, now, and in the future.
So as Cassie would say: “….a dancer dances!”, therefore I say “we live to be alive”. Only each of us can make the decision of what living “is”. Some days are good days, sometimes great days. Some days are a struggle with life itself much less with an LVAD which can be pretty overwhelming.
HELP ME RETURN TO THE WORLD OF LIVING
BY SHOWING ME HOW TO BEGIN.
PLAY ME THE MUSIC,
GIVE ME A CHANCE TO COME THROUGH.
“A CHORUS LINE-The Magic and the Mirror”
It’s not easy realizing that you have to learn life all over again. Living with LVAD has definitely been that, I kid you not! Would I do it over again, and again-YES. Just as Cassie had to come back to Broadway in order to return to the “world of the living”, I had to have an LVAD. LVAD has been a success for me and now I am trying to figure out how to make it even better. I know there is no magic answer to my moving forward other than just doing it. I work to learn as much as I can about my health challenges, understand the risks I may undertake in the pursuit of living, and share it that others may benefit. I do choose to live even when life says I shouldn’t, I hope you do to.
More to Come,
Josh
Do not question or regret the past as it cannot be changed. Strive for the moment and all that it can be as the journey does continue. –jb
...Today is a gift, that's why they call it the present! -Babatunde Olatunji
No comments:
Post a Comment