I wanted to repost this one from February 17, 2011 as a preface to my next blog entry because I will be talking about the surgery that resulted in the removal of my pump on March 15, 2011. I look forward to sharing more soon!
I have come to believe that there is nothing random about this life and that each situation we create, each life event that occurs, and each person we encounter have within them rich lessons that allow for growth and evolution. I rarely sit within a situation for long without this perspective and perhaps that has allowed me to continue to move forward in spite of adequate justification to throw in the towel at times. Looking at the bigger picture often serves me well, in spite of the obvious problems that can create with missing some details along the way.
Because of this belief, I am hesitant to share a current situation because I feel certain that there is some inherent lesson that I am not yet able to see. Interestingly enough, it is also because of this belief that I feel writing about it to share might be a good idea, particularly since I have had few opportunities to share my thoughts or feelings about it. It is clear to me that what I am not saying about it is creating quite an energy drain for me as well. Let me start with the back-story.
Many of you may know that I have a pump implanted that helps to manage the symptoms of a motor neuron disease. The symptoms of the illness came on with a vengeance and quickly required adaptation to a wheelchair and an inability to drive, work and function with the basics for quite a while. I was finally able to get the pump, which is a more effective delivery system than oral medications, coming up on four years ago.
For three and one half years, I have had no issues or problems with the pump and the results of it were far above what is usual. Most people do have better symptom management from the pump, but I have had symptom and life transformation because of the pump and my own continued efforts at physical therapy. This was quite a challenge to readjust to being ambulatory and you can read more about this on the link to the old Yahoo360 blog. I shared quite a bit about the process there.
Most of the activities I have been able to do in the past three years (it took about a year to really get the dosage optimum) were not things I had ever hoped to do again. I went kayaking for the first time (and many times after), camped with my dogs, ran four 5k’s, can again drive a car, took an RV road trip to NC with some friends, did some pretty heavy labor for doggie rescue, went sailing, and most importantly to me is that I have been able to actually walk my dogs whether or not there are sidewalks, wheelchair access or curbing along the way!
I was able to create a new life and did so with a zest and gusto that I never really had prior to becoming ill. I like what I have created and am grateful for every opportunity and every person who becomes a part of my life.
As I said, this has been wonderful and I have moved forward in this life with a knowing that the pump effects are not likely to be optimum indefinitely. There are limits to dosing and other issues that can arise. I am fully aware of how temporary this can be and most of the time; this only enhances the joy and excitement in being able to do so many things.
Last July was the first time a problem arose and it appeared that a revision surgery could perhaps remedy the problem, so in September I had the first revision surgery. The primary issues were not able to be resolved, but the bottom line was that I still had the pump, I could still drive, walk my dogs, and I would just have to adjust to the other limitations. My body has been a bit unbalanced because of the surgery and since the surgery, so we had to raise the dosage on the medication in the pump because of an increase in symptoms.
Because the pump is under the skin in my stomach, each time it is refilled (every 28 days or so), a needle goes through the skin, into the septum of the pump. The skin around this septum area has always been pretty thin, and even before the problems with the pump last summer, there was a concern about this skin breaking down.
The revision surgery also involved creating a larger pocket under the skin for the pump, which would allow the person refilling it to move the skin around a bit, so that the same area was not being traumatized each month. In turn, this would increase the length of time before the skin would break down. During the revision, they also removed and adjusted the not so good skin and moved the pump over about an inch.
Ok, that was in the middle of September and at the end of January (not even six months time), when the nurse refilled the pump, there was a noticeable change in the skin at the refill area that was of great concern to her. I honestly do not look much at the pump area because I do not have the vantage point to see it very well anyway, and I probably do like to pretend it is not there.
She directed me to the pump doctors, so I went in last week to see them and shared her concerns. I asked many questions because my primary concern was what does this mean. Will this mean removal of the pump, are there ways to prevent the skin from breaking down, etc. It does not mean removing the pump at this time, but it does mean another revision surgery is imminent and all I could think was that I still had not really recovered from the last one.
I have a strong reaction to any discussions about the pump and surgery because I am always afraid the result will be its removal. To me, this means a significant change in my quality of life, even if it could potentially be temporary. Any pump issue takes my brain to what life was like for me before having it.
While it would not likely be quite like that for so many reasons, I do not have another frame of reference to replace it with, so that is where my mind automatically goes. It also goes to the time when we had reached our maximum dose during the pump trial (old Yahoo blog also shares the pump trial period), and we removed the temporary catheter from my spinal region. When we did this, my functioning was actually worse for a while than it was when we began the trial.
Just to be clear, in my mind continued pump issues bring me closer to what has always been the inevitable (losing the pump or the pump no longer being effective at managing my symptoms).
Here is what I know for sure from discussions with doctors before the previous pump revision surgery. They can revise it only a limited number of times before having to remove it with the hope of eventually placing it on the other side of my stomach and switching the catheter routing around.
Moving it to the other side involves not having the pump at all for a time (several months), which involves losing a significant amount of physical ability and cognitive ability because the oral medications do not work very well and are sedating. Recovery time from surgery in and of itself appears to be longer for me than anyone ever estimates and the more surgeries you have, the more risk for infection. Of course, the skin breaking open is also is a huge infection risk.
I suppose my ultimate struggle here with another pump issue is that I simply do not have any idea what my life or functioning would look like were I to lose it. I do realize this is catastrophizing a bit, although I could argue that you did not know what my life was like before the pump. I am still working on that particular story.
There certainly is some irony to being in this frame of mind, and working my story about what it was like before the pump! I actually do not appear to be able to separate these two emotional reactions lately either. It is more emotional to write about than I anticipated and the current issue seems to be exacerbating it for me.
Of course, it is possible that the process of writing my story will eventually make it all look a bit less scary because after all, I did survive it, had adapted to life in the chair, and after the homeless program/nursing home period, I could even say I was happy having my life back with my dogs.
I was happy even if I could not stand up, could not think clearly because of the medications, could not drive, could not work, etc. I was able to get to that point regardless of how difficult it was. As I suspected before writing all of this down today, I am back to the bigger picture and the lesson here.
The truth is that we all have things that we feel enhance the quality of our lives. For me, this is the pump and my dogs; so as a result, I am a bit attached to these, as we all do with whatever it might be that we do not wish to live without. The bigger picture is that all things are impermanent and no amount of holding on tighter changes that. This seemed to be the lesson from July through the last surgery for me, and clearly is an ongoing struggle for me regarding the pump. Knowing any of this really does not seem to make it any less of a challenge!