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When you have a disease as complex and rare as hollow visceral myopathy, a form of chronic intestinal pseudo-obstruction, most people, medical practitioners included, are left gasping for words just trying to pronounce it. When it comes to actually providing aid, I’ve found time and time again I am the best qualified to tackle all of the complexities of my disease simply because I am the most invested. But it wasn’t easy to get this stage.
Compliance has been a constant problem for me. With so many seemingly insurmountable obstacles in my way, at times it has seemed as if I were the Greek god Atlas, carrying the weight of the world upon my shoulders. To do any more than I was already doing felt impossible; it was like a physical force pushing me down.
Fortunately my journey has been long, despite fate seeming to sometimes wish otherwise. I have had many opportunities to learn and the will to do so. However, now that I have the knowledge I still have to constantly keep an eye on myself or my compliance with my health regimen slips. Yet at the same time, I have to remember that a little bit of noncompliance, when planned, can keep me sane and keep me going another day. Compliance, at least for me, is a fairly complicated issue, so allow me to begin at my beginning.
By the time I was sixteen I had received two major emergency surgeries, had been placed on a combination of parenteral nutrition (PN) and tube feeds (EN), and finally had a full diagnosis — and all of this happened within a six-month period. It was a lot to take in.
When I was discharged from the hospital I was not about to complain openly about all of the things I was supposed to do. But over the next couple of months — though I had the help of my parents and some nurses — I began to rebel in small ways. Perhaps I would eat something off my diet, or change my line dressing a little late. Or I might tax my body beyond what it could handle. Sometimes I rebelled in bigger ways.
Besides rebelling against the prescribed health regimen, there were also things my parents and I were missing simply because we did not know about them. I was being “noncompliant,” but not by choice. Whether willful or not though, not following orders in the first few months with HPN led to a lot problems for me.
I had one episode where I went insane and had to be restrained for a week due to a combination of pain meds I had been put on during a hospital stay for a bowel slowdown. Once I had a major blood infection and had to take medicine so harsh my entire body shook while I took it. Last, but not least, I had to undergo another major emergency surgery.
In point, I was probably lucky to see the new year due to noncompliance in my first few months on HPEN. Afterwards, the severity of my situation began to sink in. I took over the role my parents had previously filled and began doing my own medical care, and I began to be a bit more serious about staying healthy.
Over the next couple of years I transitioned to full tube feeds and then to full HPN. Along the way I slowly learned more and more, and with each year I have been better able to comply with my doctor’s orders. This is because not only have I been getting better, but things are getting more “normal.” I am getting used to living such a different lifestyle.
I’ve still suffered some serious complications, blood infections and surgery included, and though sometimes it has been due to noncompliance, I have learned each time. Even with all the knowledge I now have, compliance is still a constant annoyance and problem, but at least its not a life-threatening danger anymore.
Unfortunately, depending upon the condition that leads you to require HPEN, and its severity, you could need to have the knowledge of — at minimum — a trained nurse practitioner to take care of yourself. Being a young man who is supposed to be coming into his prime, I try to do everything for myself. As you can imagine, this leads to problems.
Doing everything for myself includes being my own nurse, ordering supplies weekly, scheduling drop off of said supplies, organizing medical insurance coverage, calling doctors, and, of course, the process of hooking up to and unhooking from HPN, as well as accessing my port.
In addition to the seemingly endless inundation of boring work and at times stressful procedures that come with being my own nurse, I must constantly comply regarding a plethora of other issues. These include watching calorie loss and calorie gain carefully; doing a bit of exercise whether I feel bad or not; and holding back when I feel like a million bucks. I also, of course, have to strictly watch my diet. Usually this means not eating anything at all, while keeping in mind that not eating could lead to liver disease.
Constantly complying with the ins and outs of having my disease often leaves me breathless. When I already have exhaustion issues, having any sort of life outside of my disease can be near impossible. I can think of nothing more infuriating than finding even the simple things in life are too much to handle because I used what little energy and will I had had to deal with medical concerns.
For this reason I may never be rid of dealing with compliance. As long as I have to choose between enjoying life and complying with the routines made necessary by my many medical issues, I will always rebel a bit — for as long as I am sane and willing to keep fighting. I do not believe anybody can be asked to be that perfect, or, in my view, to become that boring.
Having so much on my plate, there are times when I ask myself if I can do it all, and at times the simple truth is no. I hit this wall soon after my first surgeries, when my illness truly started to affect me physically. Instead of listening to my family, my doctors, my body, or just plain common sense, I rebelled against my constraints.
This was not a good idea. The indiscretions often landed me back in the hospital. But with some help and a bit of luck I made it through. And, despite the fact that I did rebel and it was dangerous, at times I felt there was nothing else I could have done.
Part of the reason I believe I am still hopeful and strong, and still willing to push on, is because of my insanely stubborn nature. So if you are a caretaker or family member with a rebellious consumer on your hands, be vigilant, but also be somewhat thankful — their stubborn nature may help them push on, too.
On the other side of noncompliance because of rebellion and dissent is noncompliance due to a loss of hope and an absence of energy. Some days things seem to be too tough. All the physical issues, combined with everything else, can really feel like too much. It is hard to do anything at all.
At these times I really can be incapable of taking care of myself. For that reason I think it is essential to always have friends, family, and caretakers on hand. They can help me, but more importantly they need to kick my butt every once in a while, and tell me how lazy I am being...even if they are being hypocritical, as most healthy people are.
Even if your situation truly is overwhelming and you truly feel like you can’t do anything, it can be useful to have people there to push you a little. Having an illness can be a rigorous balancing act. You cannot push yourself too hard, but to let yourself give up can be far more dangerous. So even if it makes you angry, even if you feel they do not have the right, be thankful if you have someone who wants more for you.
So what can we do to keep up compliance? Try, try, and try again. The more you do it the easier it becomes, and with any luck you may get into a routine.
On days when the exhaustion, nausea, pain, or whatever is just overwhelming, focus only on finishing the essentials. Remember that not only will doing the basics with your health care help you feel better physically, but you will also have accomplished something.
It can truly be overwhelming to have to work so hard just to ensure you can see another day. I have had a lot of close calls in the past, and many times they have been because of, or related to, my choices. This can be hard to accept. But doing so gives me hope that with maturity I may find it easier to comply with the many things I know I should be doing. And with that will come much more for me to enjoy.
In fact, I am already seeing the benefits. I just can’t let myself stop trying.
LifelineLetter, May/June 2010
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Feeding Tube Awareness Week
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Oley exhibit at A.S.P.E.N.'s Clinical Nutrition Week
Oley Regional Conference