May 30, 2004

Main Page • John's Journal (2000-2003) • CLL Information • Contact John • Seattle Cancer Care Alliance • MD Anderson

Today I pray the lyrics from the following Jeremy Camp Song, Walk By Faith:

Well I believe you when you say,
Your hand will guide my every way.
I will receive the words you say,
Every moment of every day.

Well I will walk by faith,
Even when I cannot see.
Because this broken road,
Prepares your will for me.

Help me to rid my endless fears,
You've been so faithful for all my years.
With one breathe you made me,
Your Grace covers all I do.

Prayer draws me closer to Him and gives me the strength and courage to endure each set of challenges that come my way. I was supposed to have the weekend free from clinic visits. However, when going through a transplant one must surrender to the fact that your days are never your own. You never know what might happen with your body from one day to the next. The body's response to the new donor cells, the numerous medications, and a host of other variables constantly fluctuate and it is important that the doctors follow your bodies blood counts and blood chemistry in order to avoid any serious complications.

Saturday morning I came in for a blood draw and a nurse/doctors visit to follow up on my previous days concern about stomach discomfort. I arrived at the appointment with concerns of GVHD in my stomach. However, the doctor's initial conclusions were that I was having gastrointestinal irritation due to some of the medications I am taking. He suggested I try eating a blander diet, following meals with Malox, and drink carbonated sodas such as 7-UP, Sierra Myst, or Sprite. I was much happier with the results of this visit since I was anticipating something much worse. If my stomach pains continue, however, I will need to see a Gastrointestinal doctor next week to rule out anything more serious. The doctor's advice was effective, however, since my stomach discomfort has improved significantly. I am not in total comfort, but much improved. One drawback from yesterday's visit came from my blood chemistries. My sodium levels were pretty low. As a result, I had to take a sodium rich 500mL home infusion bag home to try and bring my sodium levels back up to normal. Low sodium can be dangerous because it can result in seizures. The home infusion process is pretty easy. I have a portable pump at home, which I hook up to the infusion bag and connect to my Hickmen Port. I place the pump and infusion bag into a small pack and I'm totally mobile. No need to hang out at the clinic for the infusion.

Sunday's plan was to stop by the clinic in the morning for a quick blood chemistry check and the rest of the day was to be spent with the boys as they had planned to come up and spend the afternoon with me. As I mentioned earlier, however, your days are never your own. Blood chemistry results indicated my sodium had dropped even further, despite yesterday's infusion. Consequently, I have had to spend the entire day at the clinic having a 1000mL Sodium Infusion as well as additional blood work to try and determine the cause of my dropping sodium levels. The doctors have concluded that the Cyclosporine and Prednisone medications I am on are probably the cause of my rapid sodium loss. As a result, they gave me a special diuretic IV to help me hold sodium, while allowing my kidneys to pass water. I will be back in the clinic tomorrow morning to check all the blood chemistry's again.

I am grateful we are trying to solve the sodium issue, but clearly, I am saddened that it hasn't worked out to be with my boys this afternoon. I miss them each and everyday and I was really looking forward to being with them today.

So as I lay here in the clinic I pray for patience and to not be discouraged. I will lean on God's strength to carry me through today's disappointment and challenges. I know that God is with me and with my lovingfamily, regardless of the circumstances each day brings.

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