A long, long day

Yesterday was my first trip back to UCSF. I saw the surgeon, and he is delighted with my progress. The appointment was for 8:30 A.M., so we had to get up early and drive in a bunch of traffic. I walked from the parking garage to the clinic. He adjusted my meds and I got more pain pills. I asked him about a pulling feeling that I have in a place far away from the incision. He said that if I knew what he did in that area, I would know why it is so sore. I have cut down on the pain meds and notice all sorts of sore spots throughout my abdomen. The bottoms of my ribs are also very sore due to the retractors.
We decided to go home through Half Moon Bay along the Coast. It was very pretty and we got some peas (Karen, they were even more delicious than the ones we got). We had to stop at Kaiser to pick up the prescriptions and I had to do some labs. Finally we got home, only to go back after dinner to get more meds and another lab test. I was tired!
Tomorrow I have to go back for my regular labs. This is hard work!

and...and....and

The range of guesses for the total length of the incision was a low of 13 inches (thank you Brian!) to a high of 32 inches (what were you thinking Randy?). Dad measured and the total is 16 and 3/4 inches. Congratulations Christine! The staples were a bit trickier. Dad had to start over because he lost count. The range of guesses was a low of 26 to a high of 75. Sadly (for me) the high of 75 was closest to the actual count of 64. Congratulations Karen! They get removed next Tuesday--I think that will be the last big owie for awhile.

Contest Anouncement!

The kids have decided to guess on how many staples and the length of Cathy's incision, horizontal plus vertical. Results to be announced tomorrow!

Lab results and a little more

UCSF called this morning. They tweaked one of my meds (less!!!) and the lab values are good. Creatnine (kidney function) was higher, but that was due to to one of the meds. I am still anemic and very weak; I didn't need a lab test to figure that out. I spend most of the time on the couch or in bed. The surgery part feels OK and if I had any energy I'd at least be walking all over and maybe sorting and folding clothes.

Amyloidosis

Amyloidosis is a strange disease. I've seen probably about 50 with familial and 20 with primary. I also belong to a nationwide online support group with many members. The common thing between all of these people is that the amyloidosis affects each of them very differently. The protien fibrils basically destroy organs and tissues--personalized. The only way to diagnosis it is with a tissue sample--there are no blood tests or x-rays or anything. For those reasons it usually takes awhile to diagnose it after symptoms have appeared.
Tonight at 10:00 pm (9 central?) on ABC there is a TV program about a guy with amyloidosis. I've also heard there are a couple of "House" episodes that feature amy and one "Mystery Diagnosis". I'm looking forward to watching it. Might be interesting....

Win-Win

Today I got to get out of the house. I was actually looking forward to it, but car rides still jostle too much to be fun. I looked at the lab slip. I go every Monday and Thursday for I don't know how long. The lab order was for 100 visits and expires in a year. I'm tested for eighteen different things. Luckily it only needs four vials of blood. I'll be able to get my results online. When I gave her the choice of arms, she kind of gasped. They look awful!
I'm wondering how anemic I am. I have a chair at the top of the stairs as a "pit stop" when I go to bed. I took a couple of short walks to the door last night and am beginning to walk like a human being--good foot positioning and good posture.
The house cleaner comes this afternoon. It's shaping up to be a better day!

Help

I need about an hour's worth of housework today or tomorrow. If someone can help and email me I would sure appreciate it. Thank you so much.