Monday, January 28, 2008

Newest information


Photo: Mark Bodnar


The good: Jen is off of TPN, at least round the clock and has been moved to J-tube feeding. Apparently there is a new formula that she can use that hopefully won't make her as sick. The docs think that since the swelling has gone down she should be able to tolerate it. This will give her her necessary level of daily nutrition, and anything she can eat on top of that is bonus. Her protein levels have been rising now - the first time in months - which is also a sign that her internal swelling has reduced. She has been overall more alert and has been eating pretty regularly over the past 2 weeks until 2 days ago when she started another bout of nausea...

The neutral:
Jen's kidneys have pretty much stopped working at this point for good. We knew this was happening, so it comes as no surprise. The 'good' is that her kidneys are no longer working against her by allowing the proteins to spill into her blood. The 'bad' is that she is now reliant on dialysis as a sole means of filtration.

The bad: Jen's heart infection appears to be fungal, though controllable. There still is no clear answer on what it is, but the signs point more toward fungal than yeast, bacteria or clot. I was hoping that it would turn out to be just a clot but it is very unlikely at this point.

The GI is apparently a fucking ghost because no one is able to speak or see her except by extreme chance. The only time she has talked with Jen is once in the past 2 months. I have called her office and left messages and talked with her staff more than a dozen times over that period, and have asked every doctor that sees Jen to call her and tell her to call me. She has not contacted me once in that time peroid. I am filing a compliant with Kaiser over this, even Jen's regular doctors have complained about her lack of communication.

After speaking with Health Net (my coverage) I'm not sure how to proceed with taking Jen out of Kaiser. Kaiser will not allow a Health Net doc to see Jen while she is in the hospital apparently, and Health Net is unwilling to deal with her until she is seen by a Health Net doc. So, in effect, my wife's health hinges not on what the best treatment options for her are, but rather who is the most willing to take a policy risk. I'm convinced that anyone who still thinks private medical insurance is the best way to proceed in the country has never had to really deal with a crisis within this system.

3 comments:

MsAmpuTeeHee said...

Thanks for the update.
Amen on the state of the medical system in this country.

Robert said...

You and Jen might want to file a complaint with the State Medical Board specifically against the GI. Here's the URL...
http://www.medbd.ca.gov/consumer/complaint_info.html

Paul said...

Great link Robert, thanks. I think I'll do that.

Sorry for the lack of updates lately...