I Have an LVAD, Pacemaker, DVT, and AIDS; THEY DON’T HAVE ME!

Hi everyone
I know, I translated somebody else’s slogan to my own situation, but I do not think they will mind, after all we are all fighting a similar battle. It does sort of say it all. If “IT” has you, then you have stopped or given up any control that one has over one’s condition. This is not just applicable to medical challenges or disabilities, but with any of the challenges life may present (including such things as being poor, or abused, or not educated, etc.: there are always reasons that one can blame or hide behind, but ultimately it does come down to me (you) taking the first step no matter how small). I will stop short of saying it is as easy as saying yes or no, but it is close. You do have to make some effort to take ownership of how I(you) respond to what life presents to me(you).
All too many times I have wanted to throw up my hands and say woe is me when it came to my more recent health challenges. But the “pity me party” has had to come to an end before things could get better. I have been told I can be pretty intense when I get on my bandwagon, I don’t really mean to be, but the above statement is a must in order to start the real recovery. The latest challenge for me was getting the LVAD (left ventricular assist device). It occurred when I was in the poorest of health. Even though I had been diagnosed with cardiomyopathy a couple of years earlier, and for that matter I had even been told I was in heart failure eight months earlier, prior to receiving my bi-ventricular resynchronizing pacemaker in January, 2007; I still did not want to accept the fact that I had a failing heart. I seemed to improve rather significantly and quickly after each change in treatment. Everything was OK, right?
NO, and I never wanted to think I had heart failure or that it was happening to me. My father died at the age of 56 from heart failure due to an enlarged heart (but he also had diabetes, high blood pressure, arterial sclerosis, and was an alcoholic, overweight most of his life, multiple heart attacks, etc.). My brother (60y/o), also suffers from cardiomyopathy, and a few other negative factors: but me, NEVER. I never had most of the traditional risk factors other than heredity and being a long term AIDS survivor. Other than the stress of continuous travel and being a workaholic, I was relatively asymptomatic most of the time. I always had low and hi energy cycles , but I just associated it to the ups and downs with AIDS. I worked out at the gym pretty regular, not overweight, no high blood pressure, sugar and cholesterol levels good, and no arterial sclerosis. I confess I do smoke, I just can’t seem to give it up, but I am working on it. I do smoke considerably less than I did. A couple of doctors have actually said it was not a direct contributing factor, BUT IT DIDN’T HELP EITHER. I have always had great O2Sats, so I have been lucky on that front. I will eventually give it up entirely as I know I have to; I just have not made it there yet. PLEASE don’t flame me because I do smoke as I already know I shouldn’t…I am just being candid.
Last August(2008) came along, and my symptoms started to appear again, fatigue, breathlessness with the lightest of tasks, digestive issues, and a feeling that my chest was being held up and out for me. I was losing weight rapidly as I dropped from muscular 200 to 154 at the time of surgery (about 6 weeks). I even recall an episode of double vision while we were driving in mid August, and I still denied I was having a problem. I just thought I wasn’t getting enough sleep. Why I got trapped in denial, I am not sure other than I felt if I admit to a health issue, than I had lost the battle. Well that certainly was not a beneficial attitude.
Well I did lose the battle, but I hadn’t lost the war thanks to the cardiothoracic team at Cedars Sinai Hospital, the recent of approval of LVAD as destination therapy by the FDA , my pacemaker, and a boatload of med’s. I wasn’t eligible to receive a transplant, so the availability of LVAD was indeed my life saver and my only real chance of staying alive. They implanted it on August 30, 2007. I did have a rather difficult post-op recovery as I spent 6 weeks in Cardiac ICU (I understand this is not typical as it is normally more like a 10 day to 2 week stay). Once I got well enough to leave C-ICU, my physical recovery started to pick up speed. I was released from the hospital on October 17th. By this time they had inspected our home to insure it was safe me to come home and appropriate locations for equipment etc. The LVAD team also worked with my immediate emergency response (fire departments) on the particulars or difference in emergency procedures for cardiac patients with an LVAD. I also had been trained on the procedures for daily sterile wound dressing changes, working with batteries, and the workings of the components and emergency devices. Well finally I am home. I have no idea what I would do or how well I could get. Only time will tell what progress I can make as this turn in my journey continues. Few have been down this road and with only the encouragement of my LVAD team that things would get better did I continue. I felt lost as I spent a large part of my time on the couch watching life go by instead of getting up and participating. I remember saying I wasn’t going to just watch life, but watch life I did…..for awhile.
The very device that gave me life (LVAD), was the very device I let hold me back. I felt like it was all I can do to manage my regular daily activities and the new “chores” of the LVAD. As I say in the blog header, I run on batteries-2 of them about the size and weight of an older laptop battery. I have 6 pairs that I keep charged so I can do extended activities away from home. At night when I go to bed or when I take a nap, I hook up to a tethered power source that reaches my bed and to the bathroom. I have an open wound for the exit hose and wire connectors that control the LVAD implant it’s self. So, no more baths, hot tubs, swimming, or anything that would immerse the tube connection. There were the daily self tests and measurements to track: electronic control test, what rate it was operating at (rate (like a pulse), volume, flow, blood pressure, weight, and temperature. I must admit I felt overwhelmed and trapped. Top it all off, I have this canister in my chest and its beat can be felt and heard. Most all this was presented to me prior to agreeing to the surgery (my partner and sister tell me), but I have about 5 or 6 weeks I have little to no recollection. I not sure that as a patient, I really took in or understood all that was said. Under the circumstances I am sure all I thought was, “Just save my life”. Later, I really wondered what I had gotten into for the long haul.
I will admit I did get the best of care. I had great support from my partner, Don, who was there every day in spite of carrying the load of being a full time teacher (which takes a lot more time than most folks realize as teaching does not stop when the bell rings at 3), a new puppy to care for, and other commitments in the community. My sister, on a new job was incredible, she and her employer worked out an arrangement that allowed her to be here from Florida and work remotely for several weeks all together. I must thank her employer for the incredible support and compassion they showed her as a new employee (less than 1 yr on the job). My brother also came in from Florida to help and a few friends. Again, I was lucky, very lucky to have the personal support of family and friends to me keep me going even when I really thought I didn’t want to.
This experience is the kind that really challenges you to the max as well as those who love you. I am alive with a whole new life, but it is a different life! But at least I do have one.

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