So What Is A Typical Normalized Day With LVAD?

So What Is A Typical Normalized Day With LVAD?

I hope my candor in this entry will be taken as just that and nothing more. I am thrilled to be here and to be alive, but there are times or days when that feeling can be difficult to connect with. I am happy to say I have had my LVAD for 10+ months and am going strong and probably better than average. I am on LTD disability and do not anticipate returning to work. I don’t believe I can do so without putting my well being in further jeopardy. The LVAD does require a number of daily chores and maintenance activities. They are not horrific by any means, but can be lot for someone to perform depending on their health or caregiver availability. I am lucky to have my partner Don who has been a wonderful and willing caregiver while I recovered to total self sufficiency. I am able to run errands, shop, do most average cleaning tasks. Extended physical exertion and exposure to heat and/or sun does wear me down quickly. So I can’t do a theme park from sunrise to past sunset, but I am OK with that, I just have to do things in measured doses so to speak.

Anyway, the day starts like most everyone’s, just a few extra chores to get started. For me it starts with who is going to make the coffee! Fortunately my partner takes care of that on most days. If I do it, I have to get semi-dressed, unhook from the tether to my portable battery charger unit (PBU) and connect to two batteries, each about the size and weight of an old laptop battery. The tether or the two batteries connect via a controller box just under 4 inches square and about 1 inch thick. The controller can clip on a belt, a pocket, or a waist band, etc. The batteries must be carried via a pouch, a special belt, or harness. So there is a little more to getting dressed than usual.

A physical challenge is what or where to but the batteries as they and their connecting holster as they are a bit clunky. I think sometimes I also have a mental block dealing with disconnecting and going on batteries, I guess it as just a different dimension of: “I have to get out of bed in the morning…I have to put on my batteries…..so I can make the coffee …and go out and get the paper….”. Anyway, the manufacturer’s harness is not particularly user friendly and I don’t care for it (I don’t know anyone who does). So I have gotten very creative, I wear cargo shorts or pants most of the time. They can be purchased inexpensively at an army/navy surplus type store, or high end fashion at your favorite clothing store depending on your liking (or pocketbook). The side pockets are in just the right location for both batteries and their respective cable length. Since I don’t have much of a butt in spite of working out, biking, etc.(AND NO I WON’T GET BUTT IMPLANTS, I may live in LA, but I have not lost all self respect), a belt usually is not enough to manage my pants + the weight of the batteries; therefore, I wear suspenders most of the time. I have cloth, leather, and chainmail suspenders; something for almost every occasion. So I have come up with a variety of options so as to not feel too limited. The need to accommodate the batteries and controller holds true for the remainder of the day.

I have tried to turn the battery frustration into an opportunity as a friend who is a leather smith is helping me design a couple of alternate belts/ harnesses for coping with wearing the batteries. Having survived major back surgery himself with a body cast, etc.; he understands how the little things can improve the quality of life. This could be a minor business opportunity, I will have too wait and see.

There are other tasks associated with my LVAD, THEY are not major but essential. I must maintain a log of blood pressure, pulse, temperature, and weight (gains or losses of just a few pounds can be a good indicator of a potential health issue). In addition to these relatively normal measurements, I must also log the Rate, Volume, and Flow from my PBU (portable battery charging unit) before disconnecting from its tether to the batteries.
· RATE, this is sort of like my pulse or heartbeat, but rather than my own, it is the LVAD’s Rate. The LVAD has two options it may operate at: Fixed Rate and Auto Rate. Fixed Rate is usually set at a default of 50 and is considered to be an energy saving pace. Auto Rate is set up to respond according to my own body’s demand on the heart. The greater the exertion, the higher the rate, kind of like your native heart. It does have a maximum of 120 bpm (beats per minute).
· VOLUME, expressed in millimeters (ml) per beat (or stroke). This can vary significantly; mine has run from 45 to 85 mls, but 60 to 80 is probably more like the desired range).
· FLOW, expressed as liters per minute, has a typical range of 4 to 10 liters per minute (for the LVAD). A heart in complete failure would have close to a 0 liter flow. (I won’t live long like that). The minimum at rest what I have read is around 4.2. Again, the greater the demand on the heart, the higher the liters per minute blood flow must be to meet the demands of your body.
There are a large number of factors which can affect the output of your heart and your LVAD, but that will have to be the subject of another blog entry.

Other normal morning routines are not out of the ordinary, brush your teeth, shave, wash your face, etc. Most of us also like to include a daily, if not more often shower. One can still take a shower when over they want, but the days of the minute in and out shower are gone, at least for now. Since I am all wired up either to direct power or batteries, it is an entirely different procedure now. One certainly can not do it when directly hooked up to the live power of the PBU; you must be hooked up to your batteries. They have a special shower kit in which you hook up your vent/power hose and insert your electric controller and batteries. It then hangs upside with the opening down so to protect from water in the shower (from your shoulder). The next step I take is I do place a plastic wrap covering over the open wound dressing to minimize how wet it gets.

The taking of a shower itself can only be performed with a hand held shower device. I do perform mine standing, but most I believe take it sitting on a bathing stool. Basically you bath one portion of your body at a time taking care to avoid getting your dressing wet. This is particularly crucial until the “open wound has healed” to its maximum potential. I say maximum potential, because it is a continual process; somewhat like your fingernails, the wound is always healing and as such is my most vulnerable place for infection.

If one chooses not to shower, there is always the sponge bath method, or a combination of the two. Personally I do miss the quickie shower. Now I usually opt out for the sponge bath as it is less complicated than the new shower routine.

After the bathing (or anytime I become exceptionally sweaty), there is one more chore: changing the dressing over the exit tube using “sterile procedure” or at least almost sterile. At home it really is practically impossible to truly use sterile procedure, but I do try to come as close as possible. I won’t go into full detail, but you have this tube coming out of your gut that your skin has grown attached (or in the process). Currently there is only one recommended antibacterial cleaning pad recommended as it has no residue (essential for this kind of wound). I then cover it with sterile dressing, tape things up, and then put on a support belt that helps hold the exit tube in place. I call it my LVAD corset. It really doesn’t do anything for the “spare tire”, but it does keep the exit tube in place, and is my newest required component when dressing.

The rest of the day is near normal. Some of the variations from I would have considered a normal day as well as some of the activities I can perform are:
...I do struggle with depression and anxiety associated with my various health maladies. As my health in general has improved, so have these conditions. These issues are very common during pre-diagnoses of my other health issues, and for different reasons will always be a part of the recovery.
...I am more sensitive to cold and heat (heat in particular)
...Dietary habits have changed as I no longer can eat a big meal, instead I must eat smaller meals and more of them. Hey, this is recommended anyway right? I just happen to have an LVAD that takes up half my stomach and forces me to adhere to that practice.
...Fortunately I can eat most anything I want, I have no cholesterol issues, blood pressure, etc.; although they do encourage me to not over indulge on anything with sodium or caffeine, and eat a potassium rich diet. I usually do not eat a lot of fat or sugar calories either.
...I manage demands on my energies so I can get through the day. Afternoon naps are not uncommon.
...I require more sleep, or perhaps I have become more aware of what my sleep needs really are. When I was a workaholic, 4 hours (and a few all nighters) were common. Now I really must have between 8 and 10 hours sleep.
...My activities are not be as vigorous as before, but I do live a fully active life.
...High impact activities are NOT recommended, i.e. running, jumping, wrestling, falling, etc.
...I do work out and do low impact cardio on a regular basis, (including riding my bike when I choose). There are considerations one must keep in mind, but that again will be another blog entry.
...I can prepare and cleanup from my own meals, do moderate housework, work in the patio garden for short periods of time.
I can shop, go to the movies, attend the local farmers market, or go for a walk in the neighborhood.
...I do web surf, watch TV, read and write a lot. Admittedly these are easier activities, but choose not to be restricted to these activities.
...I do see more than my fair share of doctors, requisite lab works etc.
...OH and there is SEX J, after appropriate recovery, YES one can have SEX! (or intimacy as stated in the manual)

So much of life after LVAD can be near normal. There is one more component I must keep in mind is what do I do when I leave the security of home and being close to my PBU? Long distance travel I will cover later, but for daily outings, there is a little planning required. Yes, I can drive, ride a bike, and this fall I plan to get a motorcycle again (a Harley I hope). But, I must plan my battery usage, portable emergency gear. I wear two dog tags that show that I am an LVAD patient and that I have a pacemaker. I also include ALL my medications between the 2 tags. I probably have a longer list than most (20+) due to the multiple conditions I have. Then there is my emergency bag…..

It is not too conspicuous, about the size of a large “fanny pack”. In it I carry at least 2 spare pairs of batteries, a spare controller with cables, replacement vent filters, a manual or hand pump (with instruction card) for the LVAD, another copy of my medication list, my emergency contacts, and my cell phone. So it’s not all that bad. The batteries typically last 4-5 hours, this will depend on the actual demand or activity. I have taken 3 pairs a couple of times, but it is rare that I am away from home that long. I tease people and say I can jump start their car or keep their laptop running longer than their battery!

In the beginning of recovery, it did seem like an awful lot to do. There are times even now that it overwhelms me. However, the alternative is I would not be here. I know I don’t have the worst challenges in the physical life as there are many with greater challenges than myself. They often handle it with what seems to be with effortless zeal for life. Of them I stand in awe.

It is like an actor who personifies a character in a movie with the greatest ease…what we don’t see is the preparation performed by the actor to achieve his performance. I think the same is true for us with different disabilities; it was a journey to get where we are at the present, the difference is our journey continues.

If you have an LVAD or it has been recommended as a treatment, please drop me a line, I will be happy to share my experiences that I may not have yet been shared on the blog. There are not many of us (yet), and we (and our caregivers) need to share and support each other.
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