Thursday, February 19, 2009

Be Patient

Day -22 Health Score 87

I had decided to do daily entries on the days that I am receiving treatment and preparing for the stem cell transplant. I believe you get a more honest sense of what is happening if it is not filtered through the 'retrospectoscope'. Day 0 is March 13th, the day I get the transplant. I feel this might help someone going through the same process to know what to expect. The health score is how I am feeling on any given day (physically, emotionally etc...) This is quite subjective. The scale is from 1 - 100 with 1 being dead and 100 signifying perfect health. For instance, if I were severely nauseated and unable to eat, but could still get around, drive and function; that would be 50-60
If I were in bed, unmotivated to do anything, with no energy; that would be 40-50. (However, one must subtract 8 points for unbridled optimism). If I were able to boogy board, bicycle 100 km, backpack 8 miles or do a ureteroscopic Holmium laser lithotripsy, that would put me at 100. So 87 is pretty good.

The day began well as I drove down Sierra College Blvd on my 150 mile trip to Stanford. As I looked eastward over the town of Loomis, the sun was just coming over the Sierras, the broken clouds being illuminated with a myriad of colors: multiple shades of grey, blue, peach and pink. The cherry blossoms adding a responding cloud of pink from below. It felt like a glorious Spring morning right after rain. Californians take Spring for granted. A Spring day can occur here any time of the year. In Connecticut, Spring doesn't arrive until May, making it highly anticipated. The trees and ground cover are bare in New England from November through April. The green is replaced by gray, black and brown. People flock to New England to see the colors of Fall; which are spectacular. But few outsiders realize that the colors of Spring are equally vibrant and diverse; and much more appreciated. They signify the new life arising after months of dreariness. Becoming well, after months (or year) of illness, is similar to the feeling that Spring gives; a new beginning, a new hope.

Then I arrived at Stanford and became the patient. First I went to the BMT unit on E1 in the main hospital to sign all of my consents. Informed consent is the process where all of the possible bad things that can happen are explained in detail. Everyone signs, assuming it won't happen to them. And then some patients are shocked and angry when bad things do occur. Complications don't bother me as long as I know that they are expected and I can overcome them. I repeat my mantra to myself 'prepare for the worst, hope for the best'. With BMT nausea, fatigue, hair loss and painful mouth sores are common. The most feared complication is infection which can be fatal. Many precautions are taken to prevent infections.

I then went to a class for training on the care of the Hickman Catheter that will be placed on Monday. My appointment was for 2:00 PM. At 3:00 I asked the receptionist what the delay was and he said that they were very busy and that no rooms were available. At 3:15 the assistant took me in the back hallway to get my vital signs (for a class?) and had me watch a video. I asked if she was going to put me in a room and she said it was being cleaned. The nurse came to begin teaching at 3:45. I asked if we were going to a room for teaching and she informed me (with some irony, I thought) that someone else had taken the room. I share this because I know that thousands of patients experience this every day. Some days things don't go as planned; that's why we're called patients.

When some serious surgical mishap is investigated, often the root cause is a series of simultaneous mistakes. The system is built with enough backup to handle two maybe three simultaneous mistakes, but on the rare occasion that 4 or 5 occur, there is a bad outcome. The opposite can also occur. Four or five fortuitous events can simultaneously occur causing an equally rare but beneficial outcome. The benefit to me being the recipient of a healthy new heart. (The odds were stacked against me). Therefore, I will be patient and not complain about minor bumps in the road. Getting angry only hurts oneself. All concern left me as I drove home to witness an equally beautiful California sunset and was reminded that every new day is a new day to get it right.



Anonymous said...


I love the scoring system you have come up with. Nice to be able to see one number and know how you are feeling. Good luck with the BMT. Thinking about you.

Dana Nanigian

Anonymous said...


Ditto, on the scoring system. I am thinking about you and your family during this stage of your medical journey. Take care.

Susan Hollingsworth