Tacrolimus OD

I don't mean to be melodramatic, but it was disconcerting. I took my first dose of tacrolimus Tuesday night and got sick several hours later. I woke up feeling nauseous and actually vomited a little. I still felt queasy but went back to sleep. In the morning, I still felt odd, but got up and had some coffee. Like a good patient, I monitored my temperature throughout.

I went to the Internet for information on tacrolimus dosing. It was clear that I was taking too much, maybe double the dose I needed, maybe more. I skipped my morning dose and called my doctor at 9 am. I described my problem to her office manager, who said the doctor wanted to speak with me. Hours later, I called again and was told the doctor wanted me to stop the medication immediately. In a week, I was to re-start it, but at half the dosage she prescribed. Needless to say, my nausea was a sign that I was taking too high a dose. Never hesitate to question your doctor.

On another drug-related note, I got up this morning, and before I even made coffee, I started taking down the curtains in the guest and living rooms. They are washed, dried, and might need some ironing. This is what prednisone can do to you.

The Best Birthday

I just finished opening my birthday cards. Mariel called me from Peru; I missed Mark's call and Harry's calling later. I went for a massage and manicure this morning and tonight Marty's taking me out to Babbo, an Italian restaurant in the West Village.

I also went to see my oncologist this afternoon. We finally spoke about Dr. Antin's recommendations, and developed a strategy for combating my skin gvh which is getting worse.

I will increase prednisone to 40 mg from 20. I will start taking tacrolimus , an immune suppressant, again. I will take voriconozole, an anti-fungal. Am I happy about adding drugs and increasing prednisone? Of course not. But I understand I can't sit by and let my skin rot. It's not just the itchiness, which I can live with. I am the Queen of Cream. My skin is thickening, which means if you press on it, it feels hard and taut. The patchiness is also creeping up under my neck, which means the face is next and I won't have it. At least I now have an explanation (excuse?) for why my tummy is fat no matter how much abdominal work I do.

The meds can wait. The drug store has to special order 2 of them anyway. I'll start my new regimen tomorrow. Tonight I plan to continue having the best birthday I've had in a long time.

Latest Liver Levels

My doctor called today with my liver panel results. She's very pleased with the decline in alk-phos level, at about 575 right now. That's still too high, but we decided to do nothing further for now.

I had Moh's surgery on a basal cell carcinoma today. Everything went well, and I now have a puffy eye, cheek and the beginning of bruising. Some day, I will be beautiful.

3 Good Things

We returned from our trip to Peru, where we spent many wonderful days with our daughter. On the final day, Harry arrived and we all went out for burritos. Marty and I experienced a little altitude sickness, and climbing 500 steps was no picnic, but we really got a taste of the country.

For someone who's immune compromised, I did very well. My NYC doctor was worried about the problems I might face. She asked if there would be a doctor on the trip (n0) and oxygen tanks available if I got short of breath (no). Marty ended up with food poisoning on our last day. We weren't sure it was food-borne. The last thing I needed was to catch a vile virus. But I was fine and able to take care of him.

Finally, I drove my car up to the country today. I haven't driven long distance since last March.

Lashed

I was reminded yesterday that good things don't necessarily last. I don't mean to be bleak.

Since getting my new lenses, I've been on top of the world. Having spent time at the bottom of the world, I not only recognize the top, I savor it.

Yesterday, one of my contacts was irritating me so I popped it out, cleaned it and popped it back in. About 2 pm, I decided to take it out again. I'm used to perfection. This time though, my eye really hurt, a 4 out of a scale of 1 to 10. I looked in the mirror and it was also red. I immediately called the Boston Foundation for Sight who recommended I call my primary care ophthalmologist. My call was returned and appointment set up for today.

I woke up this morning with my eye feeling normal. I went to see my doctor who pronounced my eye fine, except for a tiny lash sticking into my eye. She plucked it out and said I could put my lenses back in whenever I wanted. I did as soon as I got home.

Take nothing for granted. That old latin cliche is true. Carpe diem.

Lens Update

I now wear my new lenses from about 7:30 am to 10 pm. My life has dramatically changed. I am once again exercising 6 days a week, yoga 3 times a week and jogging 3. Yes, I'm determined to build up my strength, not to mention courage, to run the Manhattan Half Marathon in April.

My new eyes allow me to entertain with ease. Last night we hosted guests and tonight we will, too. As Mariel would say: woot.

Graduated with Honors

After 4 days at the Boston Foundation for Sight, I have graduated. I haven't felt successful in a long time so I'm basking in the glow of accomplishment.

The Foundation is an amazing place. It's no wonder my insurance company covered me there and not somewhere else. This is where the PROSE device was invented. They make the lenses on-site, so you get them within hours of your fitting. If you need a different lens, no problem. They made about 15 different ones for me, not giving up until they felt the comfort and corrected vision were perfect.

You have to be trained to remove, insert and care for these pricey babies, which are made of hard plastic and shaped like stemless margarita glasses. I got the hang of it pretty quickly and so was dismissed after Day 4. They want to profile me in their next newsletter, so they took photos and will interview me via email to get my story. There's always a story.

The margarita simile made me want to have one. No, not a simile. My friend Sue and former library colleague drove up from Rhode Island and we went to a Mexican restaurant. I had a chance to show off my Spanish to the waiter. The food was delicious--I had chicken in mole sauce, something I will never cook--and the margaritas were on special. Catching up with Sue on library gossip was fun, too.

Today, I pack up and take a train to New Hampshire to visit Patty and Jeff. I look forward to a nice quiet weekend among friends.