First off, and obviously most important :P, I am now writing, er typing, on a computer again!!!!! My computer broke back in November and it took me this long to finally commit to buying a new one, then another 5 days until I decided to open it. Yes I may have some issues with change, its no wonder I had some troubles with my lungs right at first!
Today marks the 5 month anniversary of my transplant! Not that there is really anything special about 5 months but it is crazy to me to think that it has been 5 months already! On one hand it seems so short and on the other it seems really long.
I realize I kind of left you hanging there with my hospital stay...sorry! Things got worse with mr. crazy doc after my last post and we ended up putting in a request to be transferred to Childrens Hospital (where I normally go). The transfer was very smooth and within 18 hrs of arriving at Childrens I was moved out of the ICU and back onto the regular floor with a plan in place to work on getting me home. I also was able to get the IgG treatment I was needing. It had been discovered at my last clinic appointment that my IgG (one of the antibodies in your blood that help with your immune system) level was way too low. To solve this they give an infusion of IgG antibodies. Unfortunately my insurance was giving us trouble so up until this point I had yet to receive my infusion, leaving me extra prone to infection (is it a coincidence that I ended up with pneumonia?)
As far as the blood sugar issues are concerned, the insulin drip was stopped pretty much immediately upon arrival at childrens. The hourly sugar checks were stopped as well and I finally got a good nights sleep in the ICU no less (yes I was very tired) I met with my usual endocrine team at childrens and we decided to keep my insulin regimen mostly the same although we switched my fast acting kind to an even faster acting one. I have been home for about 2 weeks now and my sugars seem a lot better (also helped by the fact that I'm not sick anymore!) though now I am having lows quite often. Like I mentioned before my sugars are very much a work in progress.
After a few days at childrens I was released and sent home to finish up my iv meds. That was a bit rough as I had meds due every 4 hours, but we made it through. I am now med free (well other than all the millions of pills I take, but that will be my life from now on) and feeling back to normal, actually better than normal! I am no longer nauseous! In fact the prednisone munchies have finally set in for me and I am hungry all the time! It is a bit bazar as I will eat so much that I am uncomfortably full and yet I am still hungry. I feel very much like the very hungry caterpillar and my food choices tend to resemble his! (think cookies, ice cream, candy, pizza!) I also have more energy than I have in a long time! I even went running a few times, and get this .......I liked it! (WHAT????) Granted I didn't run very far, less than an 8th of a mile each time, but I can do it and after building my muscle mass back up I am betting I will be able to go farther! (remember I am still recovering from my 20lb weight loss, I have gained 11lbs already!)
The biggest change I have noticed is mental. I have finally come to terms with what has happened to me and that I actually can get better if I get sick and am able to function like a normal human. I have realized that I actually can make plans for the future and there is a good chance that I will be there for it! I guess after 22 years of knowing you will probably die young it is a wonder that it only took 5 months for me to switch my mind set to one of living. Granted I could get rejection any day, or die of a million other more normal causes but this time around I feel good until those happen and getting sick doesn't bring a new, lower level of, normal but instead a temporary discomfort followed by increased health! I am also much happier (probably a lot due to the nice weather!) and very much looking forward to the future knowing that soon I will actually be able to do the things I want to do and simple tasks, like walking my dog, are actually simple!
welp, thats all for today folks! So go out and um...run!?!
Hi Anna. I am your step-dad's cousin. We met briefly in Minneapolis several years ago; we ate at the Cheesecake Factory...yum! Anyway, I've been keeping up with your story via your mom's e-mails. I'm happy to now read your blog as well. What a miraculous story! You have been through so much. Your perseverence through lots of adversity is inspiring. I will continue to keep you in my prayers. Keep the spirit!ReplyDelete
Welcome back to cyberspace, Anna! :) I am so happy that you are back. And congratulations on getting a new computer! Good for you! Haha. I am so sorry to hear that you have gone through quite a lot since November, especially with your health. I do hope you get better soon. :)ReplyDelete