This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
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Back in Seattle

Well I am back in Seattle....actually got back here Wednesday night (very late I might add) and started my transplant prep Thursday morning. They did a nasal wash, blood cultures, blood work, and even cultured my Hickman line. You see the exit site of my Hickman was getting red and so we needed to make sure there was not an infection starting (which apparently can happen easy with Hickmans). The last thing any of us want to do is drain my immune system if I have an active infection. Fortunately everything came back negative and things are on track. To be on the safe side though they did start me on Vancomycin, which has been an experience in itself. My first dose I developed what is called Red Man's Syndrome, which is a common reaction with Vancomycin where the face and in my case scalp turns bright red....I looked like I suddenly had a major sun burn. That and my head itched like scalp, behind the ears, was horrible. Fortunately they gave me Benadryl and it went right away.

My mom came over on Friday and we have been out having as much fun as possible. We went sailing on Saturday morning. The Sailing Heritage does free 2 hour sailing trips for patients of the SCCA, UW Hospital & Children's Hospital. We were lucky enough to have a warm, beautiful day to go. I had never been on a sailboat before and it was something I always wanted to do. Then last night we went on a Sunset Dinner Cruise on Elliot Bay. It was beautiful! Today was a day of appointments. I had my final meeting with the transplant team to get the final okay to be admitted and my admission information. I also had an appointment with the Beauty & Cancer Program at the UW Hospital. They are fantastic. They found me a wig that looks decent, gave me some scarves, hats, and even some to wear for bed. My dad and son came over this afternoon and will be here until after the transplant. Justin however was unable to come. He has an ear infection and until he's been on antibiotic for a couple of days, it's just not a good idea for him to be here.

Tomorrow I will be admitted around 9am. I will start chemo and I have been told I will be very sick. I'm not sure how much I will be able to update during the first week in as they will have me quite drugged up (or so I've been told) but as soon as I am able I will be back. My mom and dad are hoping to figure out this blogging thing so that they can do updates from time to time....even if it's just a quick, Jaime did well today or she feels like crap...let's hope for the first! :)

Until then take care of yourselves. Here's to kicking some serious MS butt!!!


Rami amaro said...

Good luck tommorrow! I'll be thinking of you. When you start to feel better give me a call. 208-661-8248. Rami

Webster said...

Well, you've jumped through all the hoops and now you're off and running (so to speak) and I wish you all the best results and the fewest side effects possible.

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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my life with MS (among other things).

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