Way to go Brutus!

As Sarah mentioned in her great blog post yesterday, we have just crossed the 4 month milestone. Yeah! My labs today are really good – creatinine is 1.13 which is actually in the

Sophie at 14 months

Daniel at 14 months

normal range. My life is pretty much completely back to normal (or at least what passes for normal when one is a single mother of 15 month old twins!) We are gradually decreasing the immunosuppressant medications. My big concern is getting my prednisone as low as possible. I will be on a low dose for the rest of my life unless a great new trial comes out that shows how to safely stop it. As I have mentioned before it is a lifesaving drug but has lots of side effects. For me the big problem is weight gain. I like to eat way too much as it is, and the prednisone takes away the sensation of fullness so I have gained 15 lbs since the surgery – yuck. I think I am going to have to join Sarah on Weight Watchers. The round face (moon facies) that I had early on due to the prednisone has improved as my dose has decreased but my neck is still pretty jowly. The only other side effect I have from the other medications is a burning sensation in my fingers and toes when they get cold – called a neuropathy. It is not too bad but I am looking forward to summer for many reasons; my sympathies to those of you living in Minnesota.

It is interesting to live life immunosuppressed. So far I have not had any problems. I am at increased risk of what are called “opportunistic” infections – those organisms that attack the immunosuppressed host, so monthly I get a breathing treatment with an inhaled antibiotic called pentamidine to prevent PCP pneumonia. For those of you history buffs, you may remember that this was the organism that was causing pneumonia in gay men in the early 1980’s and led to the discovery of HIV. I was told that I should avoid sushi and raw fish and meat in general – like that’s going to happen – but at least I will make sure I am only eating it from a reputable source. A girl has to draw the line somewhere. I do try to make sure the kids stay healthy. I took them to the Children’s Museum for the first time this weekend. They had a great time but I cringed every time they put a toy in to their mouths (which was about every second).

The kids are doing great – walking, running in to everything, chattering up a storm although no words yet. They are teething now, which is not pleasant. Daniel is soaked with drool – imagine a steady stream coming out of his mouth, and poor Sophie just hurts – she will be fine one minute and crying the next with her fingers in her mouth. We are going to take the plunge and do the first big trip this weekend. I am taking the kids and Vilma, the nanny, to Phoenix for a few days. I have a meeting there next week. My parents and my aunt and uncle will be coming as well; my cousin who lives outside of Phoenix will also visit with her son, the twins’ second cousin. Pray for warm, sunny weather in Phoenix!


One thought on “Way to go Brutus!

  1. Hey Lisa, you’re forgetting to take someone to Phoenix! ME! I guess I’ll have to go another time….
    Glad to hear you, Sarah, the kids and Brutus are doing so well. Enjoy the sun…Indiana sucks this time of year!

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