Another Day, Another Symptom

In an effort to cross-train, I dusted of my bike and went for a ride. As I was churning up a big hill, heart bursting, I decided to take a granny break. Never heard of granny breaks? Years ago, we went on a 26-mile bike trip in Vermont, and that's what they called it when you got off your bike for a breather. I decided to take one, couldn't lift my leg over the bar and crash-landed on the gravel/grass shoulder, doing one of my notorious rollovers where I live to tell the story.

A scraped palm and some gravel pitted in my knee were all I had to show for my tumble. I wish I could say it was a freak accident, but the truth is, I'm weak and clumsy. The remainder of the ride I managed to do upright and in control.

I must have done some internal damage though, because a day or two later, my side ached and I couldn't take a deep breath. Certain movements were extremely painful, and deep breaths, coughing, sneezing and laughing were out. It's improved significantly; I'll be more cautious in the future.

I'm a normal person with everyday physical complaints. I have kidney stones and I wrenched a muscle in my back. There's nothing like pain to get your mind off dry eyes, leprotic skin, muscle weakness, tendon tightness and mysterious liver issues.

I'm pretty lucky. You're lucky, too, because I was going to bore you about plate tectonics in wake of yesterday's "East Coast" earthquake. In relation to personal quakes past, this was underwhelming.

Stoned

My abdominal ultrasound showed no abnormalities with my liver, etc. but it turns out I have kidney stones. That explains the intense pain I get in my side once or twice a day. My internist diagnosed gastritis a week ago and put me on Prilosec, which naturally had no effect. 1000 mg of Tylenol seems to do the trick, although my liver doc says to limit my intake to 2000 mg/day. If for some reason I go over the limit, I pop an oxycodone and stay out of traffic. I'd rather be a little stoned now and then than in pain. I've had enough pain.

My doctor wants to do a biopsy of the liver to confirm gvh and proceed from there. I may have to increase the dreaded prednisone. Currently at 10 mg, I'm hanging by a thread anyway. My skin has a leprotic look to it, although my face and trunk have been spared.

In the meantime, I'm in the country training for the marathon and wrestling with the gangly shrubbery. I think I'm winning. Today I hope to get out there and weed the perennial beds. I have a foam cushion for my delicate knees. It beats trying to squat or bend over and risk looking unsightly. You never know who's peering out their window at my backside.

Happy Birthday to Me

You'd think that realizing it's your second rebirthday would be effortless. Come on, I'm 2. Give me presents and a yummy cake and I'll be happy.

Love Your Liver

I really like my new hepatologist (liver specialist), however, I hope ours is a very short relationship. I'll have blood drawn today for every virus known to man. Of particular concern, is my ALP number, alkaline phosphatase. This is a measure of bile duct blockage. I'll be having an ultrasound of my abdomen to check for abnormalities, although the doctor couldn't feel anything unusual. She did take me off Lipitor since that can adversely effect the liver.

It's strange to think my liver might be in worse shape than Keith Richards'.

A Day I Don't Reach for Ativan

I was proud of myself yesterday. My doctor's office called to tell me I had an appointment scheduled with a hepatologist, a liver doctor, for Friday. I asked the receptionist why, but she didn't know. My doctor was supposed to get back to me but as of now, has not.

My first reaction was a sinking feeling in the pit of my stomach. Many of you know what this feels like. I went on line and researched what hepatology is. A hepatologist treats liver diseases and disorders. I know my liver issues relate to my transplant, and that the graft versus host disease that plagues my body tissues means my donor is doing his job. I'm coming up on my 2-year anniversary next week, a milestone. I remind myself of this every time my eyes get so dry I feel they're being poked with needles, or my body swells with an extra ten pounds of water.

These problems haven't slowed me down. I spent a week in France and Spain with my daughter last week. The France part was relaxing since we stayed with friends at their country home outside of Toulouse. The 2-day Barcelona whirlwind almost did me in, but I had fun and managed to survive. We ate a lot, walked a lot and saw some amazing things.

After a week of not training for the marathon, I went to a hill workout Tuesday night and walked away without limping. I plan to run for 45 minutes this morning while it's still cool. I'll let you know what Dr. Liver has to say.

No Longer ExJaded

After 7 nasty months of taking this cruel but effective medication, I'm cured! My liver has off-loaded all the iron necessary, thanks to Exjade. Does this mean I'm jaded again?

No dancing in the streets yet. My skin gvhd has reached a new level of misery, prompting the need to up the prednisone and apply a steroidal cream to the affected areas. I'm also up to 60 mg. of Lasix to knock me down to size. So far, it's working: I lost 6 lbs. over the weekend. I've already tapered back to 40 mg., so we'll see how it goes.

I saw my doctor today and told her I'd run 7 miles yesterday. I asked her point-blank if running the marathon was a bad idea. She admitted to never knowing anyone in my condition that's run a marathon, but I sense she doesn't know many marathoners. I only know a handful, one being my son.

What about all those marathoners without legs?

Medical and Fundraising News

I took a week off and did nothing. Well, I did train for the NYC Marathon which I'm running in November with Team in Training. I spoke with my ophthalmologist's office while I was away and it looks like I'll be getting my lenses August 10th. One more month of poor vision and extreme discomfort. I'll manage. I went to photopheresis yesterday and can report that my bloods counts are almost normal. I'm still struggling with edema and now take 40 mg. of Lasix per day, which has become a mere "maintenance" dose.

As for fundraising, please visit my Team in Training site if you haven't already done so. There you will find the secret to my running "success."

http://pages.teamintraining.org/nyc/nyc11/pjempty