Life is a constant balancing act as we walk on our individual tightropes. Some days are smooth sailing and we glide across with such grace. Other days we find ourselves swaying back and forth as we continue to put one foot in front of the other. Then there are days we find ourselves hanging on by a thin thread. I find there are times–as I gain more knowledge of my health–that there is a fine line between feeling overwhelmed and feeling empowered.
I had my four-month check-up with my nephrologist last week. As always, I left as a more knowledgeable transplant recipient than when I entered my doctor’s office. We discussed my ongoing back issues and the health of my kidney. I am thankful that my kidney is doing well. However, due to the cortisone shot that I had in my back, I am experiencing persistent high blood pressure. Just like when we are prescribed medications it seems that when we try to fix one problem, another occurs. For instance, I take two kinds of blood pressure meds. The first is metoprolol, which is very safe for transplant patients. However, I have to take a low dose because the normal dosage causes my pulse rate to drop significantly. So, the doctor has me on a second kind of blood pressure med called norvasc. But norvasc causes swelling which in turn raises my blood pressure, so I also have to take a water pill. Seems crazy, right? We reviewed my current dosages and came up with a plan to keep my blood pressure at a safe level while my body is processing the high dose of cortisone it received for my back. I need to monitor my blood pressure twice a day and was given instructions on what meds to take depending on what the numbers are. During the course of the hour that I spent with my doctor we discussed so many other issues and topics that he had a list typed out for me. We added fish oil and vitamin D to my daily supplement list. When Dr. Bhat walked me to the check-out desk to schedule my next appointment, he stood there and reviewed the long list of items we had discussed during the course of the appointment and the changes that need to be made in my daily regimen. With a smile on my face, I replied, “It’s as easy as that, right?” I had to try and keep things light for I was just infused with a lot of information. I couldn’t help but wonder how other patients feel after receiving such a lengthy amount of information about their health.
On my drive home I had to stop at the pharmacy to fill some new scripts. I was trying to absorb everything when suddenly I noticed a billboard with an all- white background that read, “Believe” in large, bold, blue print. This stopped my train of thought and I took a deep breath and relaxed a little. I walked into the pharmacy and as I stood at the counter and handed in my new scripts, the song, “Beautiful Day,” by U2 started playing. This was the theme song on the Donate Life Float when I was a float rider in the 2011 Rose Parade. This brought a smile to my face and my worries seemed to subside. I believe in signs and think it is important to not miss them along the way. These two signs helped to give me balance and feel less overwhelmed and more empowered.
When I am dealing with health issues above and beyond the staple ones, like my kidney transplant, a feeling of being organized keeps me sane. I keep a daily record of my back problems in a separate, paper notebook. I keep a daily log of how I am feeling and any changes in my health. I record my daily blood pressure readings and the additional blood pressure meds I take based on my blood pressure numbers. I also track the date and times that I take medications that are different than my normal meds such as my pain meds, muscle relaxers, etc. I have file folders for all of my paperwork related to doctor visits, hospital stays and new medicine information. By writing everything down and being so organized, I feel less overwhelmed and feel that I have the best handle on what I am going through and am being my own best advocate. When I see my doctors, I take this daily log with me and can answer any of their questions and it enables us to go back and review the information to measure my progress. When I have everything down on paper I feel empowered.
I try and put myself in the shoes of people who have been recently diagnosed with PKD–the ones that dialysis is in their near future; I think of others who find out they are about to be placed on the transplant waiting list, those who are waiting for ‘the call’ to receive the gift of life, or the caregivers who are the biggest cheerleaders and support system for those of us with PKD. We are constantly inundated with so much information. Sometimes we are so concerned and scared that it is hard to absorb everything. As I continue to walk on life’s tightrope, I learn more lessons that help to keep me standing tall. I’ve had days where I feel as though I can’t wipe the smile off my face and I am doing cartwheels across the tightrope and flying so high that my feet are barely touching the rope. Other days are more emotional and I find myself with both arms reaching out in need of hands to hold for support. Regardless of what the new day brings, I continue to put one foot in front of the other, for every new day is a beautiful day.
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What helps you with that fine line between feeling overwhelmed and feeling empowered when you gain more knowledge of your health?