For Better or for Worse

August 02, 2009
For Better or for Worse

By Peter Laird, MD

In 1998, I sat down to tell my wife that I had found blood and protein in my urine. The life insurance report had shown a high urine protein level which I did not expect when I filled out the forms. I was even more shocked when I found not only protein, but high levels of blood in the sample that I tested myself. With tears in her eyes, she asked me if I was going to die. At that moment, I didn't have the answer to that question. Over time and after several tests, my nephrologist and colleague settled on the diagnosis of IgA nephropathy. A renal biopsy several years later confirmed this long held suspicion. At first, from the several patients I had treated with IgA nephropathy myself and their benign course, I concluded it would be more of a nuisance than a serious health issue for me and for my wife. However, each year my creatinine began to climb and the reality of significant renal injury began to sink into my conscience slowly but inevitably.

In 2005, it became clear that my IgA nephropathy would lead soon to renal failure and dialysis. I consulted with a nephrologist at Kaiser Sunset who is also a UCLA professor for a second opinion. He recommended home hemodialysis using a buttonhole technique if I was not able to have a preemptive transplant. That was the first time that my wife truly realized the impact this would have upon our lives. She soon offered me her kidney if it would help keep me alive.

A few months before I started hemodialysis, my wife and I sat through our class on renal transplantation as one of the steps to being placed on the renal transplant list and consideration of living donation. It all seemed a bit surreal since I had several of my own patients go through the same process. My professional detachment from the personal costs of disease hit a brick wall. Marilou and I discussed the different side effects of the transplant immunosuppressive drugs and soon realized we would be trading one disease for another, even with a preemptive transplant. There would be no cure for my disease, only different treatment options, all with their own unique set of risks and benefits.

Renal disease had now begun to enter into our lives and into our marriage. The care free lifestyle of taking our health for granted came to an abrupt end the day I started hemodialysis on February 1, 2007. My wife was beside me that day as they hooked me up to the machine for a two hour run at 150 ml/min. A month later, the issue of transplant took a back seat to the diagnosis of an early malignant melanoma from my days of fun in the sun on the shores of Cape Cod at my grandmother's house. Those bothersome sunburns now came home to roost years later. A tee-shirt or sunscreen was the difference now between me and a life threatening bout with cancer. My concern over immunosuppression and increased cancer risk became an overwhelming impediment to the transplant option for me and my wife. I decided to set my eyes on optimal dialysis, especially the home dialysis option.

Marilou stood by my side as we learned to do self care in center with her daily overcoming her fears that something deadly would happen at any moment. The responsibility of being my assistant left her sleepless many nights. Nevertheless, she continued to stand by my side seeing the lack of concern by many of the techs for standard hygiene practices in simply washing their hands before they came to me for treatments. She realized that it would only be a matter of time before I suffered an adverse event at the hands of those that didn't have the same love and concern for me that she had. In the last two years, I have watched my wife overcome her fears of the needles and the machine and the complications that can occur to becoming a confident and competent partner in my medical care.

During our NxStage training, her careful eye on the details of the venous and arterial pressures resolved our first complication with this new machine. The arterial pressure dropped over two cycles. The fix was easy, simply re-inflating the pressure pod, but the transformation from fear to capable dialysis partner became apparent to me and our trainer that day. Rita complimented my wife and said she was the best training partner she had ever trained. "You really pay attention don't you."

A little over a month ago, we brought our NxStage System One machine into our house. Marilou embraced snapping and tapping, boxes of supplies and daily adventures into the realm of renal care options right in our own home with calm and aplomb. Our marriage has changed in so many ways. The reality of death is an ever present presence as all who face chronic illness of any form will surely tell you. We have no guarantees of tomorrow, but the option of daily dialysis gives me the hope of a continued future with my wife beside me not only as a companion, wife and mother, but now as my personal care partner. It is not a job that my wife sought or even cherishes. I know she struggles with the reality of large needles sticking out of my arms since she prefers not to look at the needles as I cannulate my buttonholes. She tells me she can feel it as if it was her own arm when she dares to look. Marilou nevertheless is still by my side with every treatment despite the fears and the concerns of what I am going through.

Marilou and I just celebrated our 16th wedding anniversary today even though our anniversary was two days ago. It was the first time we celebrated an anniversary on a day other than the actual date. Last Friday she was by my side doing my NxStage treatment with me late into the evening. I did manage to take her out for breakfast at IHOP, but that was not the usual dinner date we have kept as a standard celebration of our marriage. My renal disease is now the new reality in our marriage. In many ways, we have grown closer and appreciate each day we have together. The knowledge that the person sleeping next to you may not be there in the morning gives us a greater appreciation of even small moments of time. Marilou herself has had her bouts with illness where she could have succumbed with out quick interventions. Death knows no bounds and has no respect of any person.

There is no one that I would rather have beside me when I am hooking up for another dialysis session. There is no one I would rather spend my time with day in and day out. It is my hope that with rest, exercise, and 20 hours a week of dialysis at home, I will continue to see the best of my wife in the worst of my health. I am grateful for the time that the Lord has given us. It is my hope that I will not leave my wife as a young widow. Marilou continues to be a source of great comfort and encouragement to me, but even more so as we jointly prepare and administer dialysis treatments together at home. Life is precious and sharing that life with my wife is the most important incentive I have to keep going, day after day and treatment after treatment. Knowing that my wife feels my pain and shares my burdens lessens the impact of renal disease for me. Spending our time side by side is the greatest gift I have doing dialysis at the Laird dialysis unit in my own home. It is the best of the worst.

Posted on August 02, 2009 at 10:44 PM in Sunday me blog, Writer: Peter Laird, MD | Permalink

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