A dismal Sunday

Hi everyone:

Well, the issue with the insurance company over Zofran seems to have been resolved -- notice how now I will only say, "seems to?" Walgreen's called the insurer, and the 30-day supply was approved. On the paperwork for the prescription, we are informed that our drugs cost us $15, and that our insurance has saved us approximately $2,700. I still find this shocking. What's even more incredible is that not even these drugs, at $90 per day, can keep Patty's nausea fully at bay. Yesterday was a case in point.

Our plan for yesterday was to clean the house, do some grocery shopping, and host Kevin's family for dinner. It became clear pretty early in the day that Patty would be unable to do much of anything. She vomited more violently than at any point previous, and was unable to leave the bedroom before early evening. She slept soundly for a good portion of the day, even with the typical chaos of kids moving around the house. When Patty joined me for the Bears game at 7pm, she offered that she would have no problem sleeping if we went to bed; she did, however, relax beside me for the whole game.

This morning, Patty is still nauseous, although not to the extent she was yesterday. As you might imagine, Patty is pretty worried about the future, because the drugs that contribute most to her nausea are certain to be part of her regimen for long after her transplant. She is also discouraged and depressed, because she wants to spend more time with both her immediate and extended family, and so often has to postpone such plans.

Later this morning, Mariska will visit and draw several vials of blood. Some will be used to check Patty's magnesium and potassium levels, to assess the risk of another shock from her ICD. More important, though, will be the vials that will be sent to UCH to check Patty's PRA levels. The bottom line, with all these acronyms, is that we should be getting a better sense about how successful these various procedures have been in reducing Patty's antibodies. From what I've researched, we cannot depend too much on one set of numbers as an absolute answer. In fact, it is not uncommon for a person to have a high PRA level through many rounds of IVIG and plasmapheresis before a breakthrough occurs. The worry here, of course, is about how long Patty's heart will hold out while we wait. I worry constantly about Patty. We worry constantly about the kids. I want so much to tell Connor, "Don't worry, Mom will be just fine," but I know that I can't offer such absolutes; all I can offer is the same hope that I hold, along with the promise we'll keep trying.

Of course, if the heart comes through soon and Patty gets through the process without tremendous complications, I'll be able to read back through these notes and realize what a melodramatic baby I've been. I hope so.

Love,
Brian