March

Mary's advanced gifted math teacher has really been helping us with her, and Mary's grades have gone way up.She had been getting A's on tests and classwork all year, and F's in homework, which made her grade for each class an F.Now she is getting C's. It still hurts to see someone who aces each exam they give her settle for C's.

I see her 4 days a week at good expense and call her the other 3, and I think she is beginning to accept the divorce and see past it. Just 2 months ago she lamented that no one just like her was somewhere in the world because "I'm sure-- divorced, disabled parents and a mother who needs a heart transplant? ? There's no one else with that."But the fractious, moody episodes are very rare now, and she sings or hums as she goes about everything, just like my grandmother, Martha Young, did.

I had trouble walking Marina to and from her bus stop daily, and being home to get her with all these far-flung Medicaid doctor appointments that can take hours longer than anticipated, so I am now home-schooling her. She loves it! And wants to continue with home-schooling next year. On Sundays she goes to the Sunday school at church with the other 5 and 6 year olds. They call for them during Mass and they all go out and learn songs and do crafts and of course learn about God and Christ.She won't miss a time for NOTHING--Jesus is the most exciting subject possible, with her. I didn't really guess kids could be born holy but I mean this kid has a focus I did not (I am embaressed to say) exactly impart.

We continuously think of moving home with the other 50% of our little family, even if it does cut me off of all medicines and doctors, just so I can raise my two girls together--I mean, maybe I'm going to die anyway. Maybe I won't get that heart and I'll be gone a year from now. I would have wanted of course to spend my last days living with both my little girls, not just one.(Dad wouldn't let me have both.)

We don't really know what to do.

The famous Dr. Uri Elkayam emailed me March 27 saying he will take care of me if and when I return for treatment at USC in LA--i.e., when i win the lotto I never play, to get out there and live there. At least, it doesn't appear that he is saying they have housing for patients yet.

There are no good doctors here-they all let me languish, their hands tied by Florida's cheap Medicaid program.Ex-I got all the way to a gasrtroenterologist yesterday--I've only been trying to be allowed to see one for a year--and my primary had not, as they promised, faxed my referral to him, so he would not see me (the primary having closed early). It took a lot of gasoline from some very poor people to go there for no reason. We needed that money for food--and now I can't see him for weeks.

I told Dr. Elkayam how a news editor had a transplant here recently who had the same ejection fraction as I do-15%--and they told him he had 6 to 8 months to live without the new heart. He was surprised--he thought he wasn't that bad.I said I liked Dr. Elkayam's court-of-lost-resort approach better.

I got this email exactly a year ago, while in Los Angeles for evaluation for transplant. I never got the evaluation--after waiting 8 months, we were so broke we had to give up, and I have now waited another 8 months for Florida's Medicaid to allow it:

Deanne,

I was so sorry to learn of your current challenges. Please be assured that there would be money available for the transplant itself if and when it occurs. The amount would be determined by need and what is available in the fund at that time. We could offer $1,000 as one source for your living expenses until the transplant. Please let me know how to get funds to you. God's blessings, Fr. Mike

March 31, 2000:

I don't know if whoever you are are going to believe this. I finally got the mammogram UCLA Harbor originally referred me for in June 99 for Aug 99 . (But I had to come back to Florida in Early August, and no one here could or would accept a Calif. doctor's referral, and it took me this long to get a primary to refer me to a gynecologist to refer me for a mammogram!)

When I got there, the technician was brusque."You might as well just cancel and come back after you've seen a gynecologist again and he gives you the kind of referral you NEED--since you have lumps and your mother had breast cancer, you need a diagnostic mammogram, not the kind your physician ordered. With his referral here, we can only take 4 pictures. We need 24, and an ultrasound!"

I said, "I can't go back to the gynecologist--he refused to treat me because I have a pacemaker-defibrillator. It would take a month or more to get to see a new one, and another month to get back here!" In desperation, I showed her the gynecologist's prescription to the primary. "Well, this IS for what we need! Why didn't your doctor follow this?What kind of doctor is he?" She said.

I'm to see my primary (Medicaid probably pays him $50-65 for that ) to tell him I need the real stuff, the stuff the gynecologist already reccommended; then wait for the resultant appointment. I bet you a zillion bucks it just happens that you can't sue Medicaid....