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