Tuesday, January 25, 2011

Starting the Year off with a Bang?

Andrew is dealing once again with acute kidney rejection. The doctors say that the upside is acute rejection can be stopped with the right drug treatment. Of course, the downside is that we have to deal with this yet again. The drugs are outrageously expensive (last tally in the past 10 days has been about $2800). Difficult to manage when you are still out of work.

The drug therapy makes him feel ill. He is constantly cold and fatigued overall. His appetite is gone and he didn't eat all that much to begin with. Tomorrow we go back for another biopsy to see if the new treatment is working, he just had one two weeks ago. The doctors are monitoring him very closely with what feels like daily blood draws.

I went with him yesterday to see his nephrologist. Those two crack me up. Andrew and his doctor have quite a sarcastic dialogue whenever they meet. If you didn't know it you would think they were old college buddies with the ease in which they converse about such serious matters.

Andrew is not the most compliant patient. Not that he doesn't take care with his meds but he likes to remind the doctors that he is going to have the last word. If the doc wants an ultrasound or another test taken the following week, Andrew refuses. He will insist that he will take the test when he is good and ready, he will make them wait an extra week or two. I think it's his way of somehow feeling in control of what he knows is out of his hands. When dealing with more urgent issues, as we are now, he follows instructions without question, thankfully.

Right now the plan is to do monthly IVIG treatments for the next three months. It is a 20 hour intravenous infusion of gamma globulin. This should stop the body from rejecting the kidney. The pounding his immune system will take leaves him vulnerable to a myriad of complications. The protocol requires him to be on a battery of prophylactic antibacterial, anti fungal and antivirus meds.

Things get more complicated for a patient like Andrew because he is CMV negative in a world where 80% of the population, I believe, are CMV positive. To make it simple, most people are exposed to CMV by the time they reach adulthood and develop an antibody to it. For the average person walking down the street it would be like getting the flu and it is not generally life threatening. For Andrew it is.

With the two transplants that he has had both donor kidneys were CMV positive, of course. With the proper precautions these kidneys were life saving transplants. When the immune system is suppressed, as is being done intentionally now, he has to have special protection from CMV. That special protection comes in the form of Valcyte, and stuff ain't cheap. Those life saving pills alone are costing us nearly $1300 for a one month's supply. And its only one of the almost 10 drugs that he has to take. That's the paradox, life saving drugs that kill us financially.

It's so easy to see how once stable people become homeless. (Relax, being homeless is not what we are worried about, at least not for the next few months)

It all seems so complicated and I guess it is, but that's our life.


  1. I am so sorry you and your family are going through this - i am going through kidney disease with my mom as well, and she acts similar to your Andrew. It is comforting to read of someone who is going through something similar.

  2. I am so sorry for your mom. Is your mom on dialisys? I hope that her condition is manageable. Take care and all the best to you and your mom. If you ever have any questions feel free to ask.