Still sorting through questions

Hi everyone:

Over the weekend, Patty and I were in touch with one of Patty's cardiologists. Essentially, we were asking this doctor if she felt there was a real chance to reduce Patty's antibodies to a level at which transplant would be safe. Further, we wanted to know if the doctor felt Patty could hope for a reasonable quality of life after a transplant. Our thinking was that if the doctor was pessimistic on these fronts, we might start considering pulling back on cytoxan to preserve Patty's quality of life now. We would still hope that, ultimately, a good heart would come through. This was not a hasty, or intentionally morbid, consideration on our part -- we just started to question whether or not there was a real chance of making things move along.

The doctor said that she had seen situations where months and months of treatment were needed to make any meaningful progress, so we should not presume (yet) that our hopes should be fading. She empathized with Patty's illness, but felt any hardships now should be rewarded with success down the road. So, based on the information we have right now, Patty's plan is to stay the course with cytoxan, IVIG and plasmapheresis. I just hope so much that all of this leads to a desirable outcome, and does not translate into endless months of nausea and anxiety for Patty. To be honest, I just want her to be healthy, happy and well for more than a day or two in a row. I don't want her smile to be always faintly masking pain and worry.

This morning, Patty vomited violently several times, and generally feels very poorly, with a pretty bad headache. Again last night, she was plagued by unusual heart rhythms as she tried to sleep. The doctor told us that we might expect such arrhythmias with Patty on milrinone, and we should not be concerned about a great risk since Patty has the ICD in place. Of course, Patty doesn't want to be zapped again, but she certainly doesn't want the alternative, either.

The bottom line with all of this is that, at this moment, Patty and I are frustrated and worried that all of this may ultimately be for naught. Having said this, we also trust her doctors to be straight with us about prospects each step along the way, and we know everyone is pulling for her. So please don't worry too much because we're a bit pessimistic -- we could be in glorious spirits tomorrow. One of the things we're learning through this journey is that there are many, many emotional ups and downs; in our life, the ups are amazing, and the downs are usually just hurdles to overcome. Please keep our patient in your thoughts and prayers...

Love,
Brian