A "New Normal"

I thought about setting up a fresh blog to post about my current health issue. I decided on this blog, originally created to rant, evangelize and prophesize on digital media would work just as well. Read below if you're curious about my opinions on that topic. Otherwise, ignore what preceded and just pay attention to posts titled "A New Normal", "My Kidney Translplant", "Dialysis 101" "How I'm Feeling Now" (some of those sound like good future titles).

If you're reading this without knowing anything about my current health status, I have stage 4 kidney disease (stage 5 is acute failure). I owe this to a genetic disorder called Alport Syndrome which currently affects about 1 in every 5,000 people. I am on a national waiting list for a kidney transplant and am being evaluated by the Comprehensive Transplant Center team at Cedar's Sinai Medical Center in Los Angeles for a living donor. I write now having just returned home from my second trip to the hospital in February.

I was admitted to the hospital two weeks prior after my creatinine was up to 5.0 and my BUN (blood urea nitrogen) was around 120 (these are both metabolic measurements in the blood that, when high, indicate severe kidney disease). With normal BUN measurements for adults being 7-20, 120 makes you feel very sick. My symptoms ranged from nausea, dizziness, fatigue, and extreme hunger.

After a 4 day stint at Providence St. Joseph's Medical Center in Burbank two weeks ago, my BUN came down from 120 to 73 with the assistance, at doctor's orders, of nearly 9 liters of saline pumped into me intravenously to help hydrate me. After things had plateaued in terms of my blood toxicity, doctors released me but warned that dialysis was probably on the horizon. The thinking: My BUN and creatinine would likely climb back to dangerously high numbers soon.

Two weeks later, the blood work showed kidney function declining again as predicted. The time had come for dialysis; the only means to rid my blood of the horrible waste materials built up that my kidneys were unable to clean and start me on the road to feeling better. I had sort of been preparing myself for this inevitability for many months.

2 years ago, my creatinine was around 1.4. This reflected a "high-normal" number. Blood work was closely monitored by my nephrologist (kidney doctor), Dr. Noha Barsoum who started getting concerned about 50-100% increases in my creatinine over 3-6 mos periods. 2.7 last summer, 3.7 after the new year, and a solid 5 in February. I had to get honest with myself and accept that I wasn't feeling "okay". Something was just "off". There was a cloud over me in terms of my daily well-being. I knew some of what I was feeling might have be psycho-somatic, brought to the forefront of my mind by the doctor's news that my kidneys were failing fast. I started reading more and more about how amazing people felt who suffered from kidney disease for years and then went on dialysis or had a transplant. They didn't realize how sick they were until they were better. My day was coming.

On Friday, February 20th I was taken into surgery to have a permanent venous catheter inserted in through my neck. Over the last two days, to be exact, I was put on dialysis twice using this new catheter as the gateway to filtering my blood. The surgery for this catheter is uneventful and routine as surgeries go, but for me it has been anything but routine. The recovery has been painful and really inconveniencing. I am managing fine, but I was not really prepared for this to be such a major ordeal. Nor was my wife prepared. The post-op was horrible for her as I was in a lot of pain and not getting the pain management from nurses we felt was needed. Several morphine doses and vicodiine's later I was fairly pain-free, but now mentally useless (thanks narcotics). Without much time to recover from the surgery and anesthesia I was put on my first round of dialysis. That first round of dialysis, I was told, could result in me feeling better immediately.

At 1:30AM Saturday morning I lay in bed by myself and actually giggle with a new found energy. Several hours earlier, I had been lying in bed stoned on narcotics, still in pain and hooked to a dialysis machine, but after that first round of treatment, I now felt good enough to get out of my hospital bed and walk to the bathroom. I just felt like a fog had been lifted.

I had a second round of dialysis on Saturday for 3 hours. My blood work has since shown my BUN down from 105 to 68 and falling!

I have clearly hit a major milestone in my treatment. It's been a long time coming. Alport Syndrome has been this ticking clock on my kidneys for over 36 years. What started with some microscopic blood detected in my urine as a kid has evolved into a full-blown kidney malfunction being aggressively treated by excellent doctors. I also have incredible health advocates supporting my recovery.

My mom has been amazing as a guide, coach, teacher, and as usual, an incredible mother and grandmother. She's held my hand from afar, flown to our aid at home, and been on the phone with me everyday to get updates. My inbox is full of her links to sites exploring my disease, diets, and treatments and my in-calling mobile minutes are maxed talking about how I am feeling. She also recently gave me a gold necklace her late father wore while recovering from Hodgkin's Disease in the 60s. The gold necklace contains the Hebrew word "Shaddai" for God of Strength . It was given to him by his wife, my Bubbie. My mom wrote on a note to me w/ the necklace that she hoped the necklace would protect me during my journey to better health. She wrote that it's what she wants for me, to protect me, as would my bubbie and papa. It broke my heart. I wear it now. It's just about the most moving thing my mom has ever done for me.

My wife Ryan has been a rock. She's been supportive in just the right way. Not too overwhelmed, but just overwhelmed enough to let me know she's in a new strange place in her life too. I anguish at what it must be like to see me go through this; even bathing me while I am equipped with delicate tubes coming out of my chest that absolutely cannot get wet. I'll never forget her for her kindness, patience, determination and bravery. : )

And last night, my four-year-old son, Jax, looked at me lying in bed in some discomfort and said, "it's alright Dada. I'm right here. there's nothing to worry about". Words I am sure he has heard his mom and dad tell him during his time of need. If I didn't already know what a sweet, special soul my son possessed, I was reminded last night.

So goes it for me now. I will stay on dialysis until I get a transplant. I will go to a local dialysis center in Burbank on Tues, Thurs. and Sat. each week for 3 hours at a time from 5:30AM-8:30AM. If you're bored and want to share a cup of coffee with me during part of my morning dialysis, visitors are welcome, coffee is free, and I'd enjoy the company. I will start feeling better and better. And as friends recently relayed to me about their friends' experience with dialysis, my life will return to a "new normal". I like that. I find that encouraging as a matter of fact. I can handle a new normal much better than the alternative.