Tuesday, January 25, 2011
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.
Thursday, January 6, 2011
Regretfully, I was unable to connect with all of you through the Christmas and New Year's holiday. On the other hand, it was because I was so busy writing, baking, cooking, shopping, and of course going to soccer games.
I never did attempt my own menudo or tamales. But Gabi and I did make it out to my mom's house in the desert to partake in the annual tradition of our family tamale making. My sister Vicki and I were outnumbered by the next generation of tamale makers, which is a pretty encouraging thing. Gabi, her cousins, Breanna, Sarina, Madeline and Christopher were all in attendance and were promptly put to work. They did a great job and it was nice to see the interest they showed in what we were doing. It was also a great opportunity for all of us to catch up with each other since we all live at least an hour from one another and rarely get a chance to spend time together.
The girls range in age from 11 to 16 and when they became a little weary of the tediousness of tamale making we sent them off to the movies together. That was our cue that it was break time at Nana's, the perfect time to break out the bottle of Patron and let it relax and warm me. Oh, of course I didn't drink alone, my nephew (Yes, he's old enough) and my sister joined in the consumption. We took a few shots and had some great conversation.
Then it was time to get back to work. I can't tell you how many tamales we made because, frankly, I don't know. I can tell you that we used 35 pounds of masa and about 15 pounds of meat. We used pork shoulder butt? What! I never understand the concept of shoulder butt roasts, aren't they on opposite sides of the animal? Who know, who cares, cook it nice and slow and it's wonderful!
The week before Christmas was nothing but rain. I had articles to write for my new freelance writing gig, which has turned out to be a great gig. Doesn't pay much, but it pays me to write, for the first time in my life. Hey, a girl has to start somewhere, right?
I had about three days to do all my Christmas shopping, not too big of a task since we weren't able to buy too much, what with us having no jobs and all. The first day of shopping Andrew and I set out together and put a serious dent in our list. Nice! The next day I set out on my own. Standing in the chaos of Big Lots three days before Christmas, I received a call on my cell.
A woman claiming to have found me on Facebook wanted to order cupcakes for her client to be delivered the next day. Uh, oh, I wasn't in cupcake mode so it took me a few moments to register what she was asking me for. But, I never say no. I accepted the challenge. I had less than 24 hours to do a gift package, go out and buy a Christmas card to go with it and get it delivered to Newport Beach. Jesus, I had so much to do, but I never say no to a client. My stress level went through the roof. I still had an article to write.
Every effort was met with the rain, rain everywhere. It made it more difficult to get around because people drive like tools when it rains. Needless to say the gift box was delivered as promised. I spoke to my editor that evening around 7 p.m. and pitched an idea for an article. He loved it but he would need it before 9 a.m. the next morning. Oh crap! Gabi had friends over and we had just finished dinner. So, I broke out my martini shaker, poured myself a little vodka inspiration and got to work. I was done before bedtime.
We were expecting Andrew's parents for dinner on Christmas Eve so we did mad house cleaning. I also had many things to prepare for Christmas Day at my brother's house. I had to do my baking as I interacted with my in-laws, there was just no way around it. Thank god my mother-in-law brought and prepared all the food for our dinner because I was not sure how I would pull that off. We ate crab legs, crab cakes, shrimp, baked salmon, potatoes and two kinds of dinner rolls. I looked at my mother-in-law and said, "You do realize that there are only six of us here?" She laughed but she just can't help herself. I felt sick when I went to bed.
We opened presents with the kids and Andrew's parents in the morning and they made a quick exit back to their home in the desert. It was time for me to get back to work. I had to make salsa, cranberry salsa, candied pecans and guacamole for the party at my brother's house in Arcadia, oh, and we had to be there by 1:00. Gabi helped my box up all the cookies I made. We loaded up the car and we were off.
We grazed all day long on tamales, menudo, pozole, ham, cookies, chips, candy, oh so many things I can't even remember. There was wine, vodka, tequila and beer. I only had two beers because, well I had no desire to feel like crap again.
Time to relax you think. No such luck. Gabi's soccer team had a tournament starting on the 28th and it was all the way in Whittier. The second day of the tournament it rained, and rained and rained. And the girls played...in the mud. It was 48 degrees pouring rain and windy. The field was crap and I just wanted to sit in the car and curl up in a ball. My heart went out to those girls, soaking wet, playing their hearts out. I was completely bundled up and I couldn't seem to get warm so I had great respect for them.
After the first game of the day, we had to find a laundromat and wash Gabi's uniform so she could be ready for the next game. There was no way she could sit for three hours in that mud soaked uniform and be prepared for the next game. We ran into so many people for other soccer teams at the laundromat with the same goal in mind. It was a miserable day but the girls rallied and really made an effort just to have fun with it. They even took a group dive in the mud for the cameras after the game. It was pretty hilarious.
After the tournament we made our way back to the desert for New Year's. Andrew stayed at his parent's house and I stayed with Drew at my mom's house. We all spent New Year's Eve day at the Living Desert. It's a small zoo with desert animals from all over the world. It was a nice afternoon.
We all had New Year's Eve dinner at Andrew's parent's house. After dinner there were two card games going on at the same time. Texas hold 'em was being played in the dining room and some of us played 31 at the kitchen table. I think my 16-year-old nephew, Matthew was the last one standing in the poker game. Once midnight came and went, I packed the kids in the car and headed back to my mom's to climb into a warm bed, it was freezing in the desert. Well almost, it was 36 degrees. Close enough.
We all made it back home, safe and sound and we are back into our normal routines. It was a nice few weeks, even with all the craziness. I think I needed the break back to normal life. It's much easier to manage than all those expectations. Hey, what am I thinking? We still don't have jobs. And I think the new auction date for our house is January 11th so still not sure where we are going to wind up living. Huh, oh well, that is pretty normal, for us anyway.
Happy New Year!