Traveling on Dialysis

Well, I did it. I made it on a plane (twice) and to my destination with my machine! I'll be honest...traveling was not easy. The machine has a suitcase that is huge and then I had another one with my clothes and supplies. Thankfully my bags of solution were delivered to my hotel. I DID NOT take all the supplies I was supposed to though as I would not had made it.

I flew from here to Minneapolis. I took a direct flight on purpose. I was supposed to be able to take the machine on the plane, but we were on a small plane and tney checked it. I also forgot I now have permanent metal with my tube.oops. Then I walked what felt like 10 miles from the plane to baggage claim and hopped on a train to downtown and walked 4 blocks to the hotel. Not to bad except the suitcases kept running into things and the sidewalk wasn't real smooth. But I made it! Thankfully on the way home someone helped me on the escalators with my bags. It would definately be easier with another person. Also I'm not sure how I'd do it if I was gone longer than a couple nights. Overall, the trip was great and I didn't miss out on anything because of the machine. By the end of the weekend though, my body was done. The following Wednesday I couldn't move and had to stay home (a huge argument with myself to do so) and crashed all day.

My health is ok. I'm keeping the numbers they watch were they are supposed to be. The last I knew of the function of my kidneys was 8%. That's scary to think about...so I don't. We are in teh part of the year where I do not have any free time or enough time and a million things happening at once. I'm trying so hard to keep doing activities and spend time with my kid which has to happen on the weekend...but I'm also noticing I am starting to have limitations. By the weekend I'm ready to crash and need some extra sleep. Last week I made it to Thursday before I felt that way. I was very thankful that my rehearsal could continue. Of course my stress level skyrocketed when the engine light started coming on in my new car. So far outside of my kidneys, everything else seems to be healthy. I know my kidneys have grown and I'm hopeful for a transplant. I've hit the time of year to renew all the tests and keep getting calls for new ones. An MRI two weeks ago, a CT scan two weeks from now, lots more doctors visits. My cancer doctor told me everything for her is looking good. The other big health thing is I finally got diagnosed/dealing with ADHD. I'm 100% sure I've always struggled with it but my life had become chaos chaos instead of organized chaos and I was really struggling. After a in depth conversation with my doctor, we decided it was time to try medicine. I have always described my head as a busy train station...i don't have one train of thought or the more modern version---I have way to many browsers open, one playing sound that I can't find and using them all at the same time. (which yes is also what the actual computer looks like). The first day of the lowest dose, my head quieted down. I actually closed real computer tabs. I could seperate my tasks. It was such a weird day. I kept wondering if that's what other people's heads were like. The 2nd day I took my kid to the state fair and we lasted almost all day before it all drove me nuts. I usually get so overstimulated and now I don't as much. While I'm still exhausted, I'm not as mentally exhausted when I come home. It's definately not where it could be I"m sure which is why we are moving my dosage up this week to try a little more, but it's amazing what difference I've seen. The ability to quiet my head some has been the most awesome and not getting so overwhelmed. What I'm saying is if you feel that way...don't push off solutions. Keep thinking of me and sending good thoughts. I'm hoping a kidney comes available sometime soon. (though summer time would be the best!!!). i appreciate and love you all!