So it has been a few days since I last updated. Sorry about that. For the most part things are going well. The weekend was relatively mild. For the last week or so I have been on IV Fluids, which I think helped me a lot. Today is actually my first day without the IV Fluids, so we shall see how that goes.

The best news however has been that I got my taper schedule to get off of the steroids on Day 21 (which was Monday). It is a VERY slow taper but I'm sure that is best because of all the side effects that can come along with steroids. Basically every other day I go down by 5 mg. So, I was on 60mg of Prednisone and today it was 55mg, tomorrow and the next day will be 50mg and so on. My taper schedule will end on October 27th which means I go back to my maintenance dose of 20mg, which is what I was on before the transplant for my lungs. Then we shall see.....

So how are things going? Well, they are going along as expected. My mom is worried I may be coming down with something and I did have to be seen in triage today because since yesterday morning I woke up with some vocal fatigue and over all weakness, not to mention I have just been really shaky. I saw my RN and PA however and they are still pleased with how I am doing. They assure us that after the transplant it is important to remember my body is healing and I'm bound to have some ups and downs. The last couple of days are probably just down days. The shakiness and fatigue is likely to be caused by the steroids even though it is such a minor taper schedule. My vitals all look good though, blood pressure is good, I'm eating more and more (thanks to the fact that my taste buds are finally back in) and I am drinking more each day. I have done well enough actually that they don't feel I need the IV Fluids anymore. The drinking is difficult however because I am supposed to drink 100oz (which is approximately 3 liters....or 6 water bottles) a day. I don't think I ever drank that much before the transplant and so it is an adjustment but I am keeping a log of everything I eat and drink so that makes me really see if I am keeping up with it.

They did blood work today just to be on the safe side and we have decided to just take it easy. We rented a couple movies (so far none of which have been any good....what's that all about?) and have just been hanging out at the apartment. I did have a follow-up with nutrition today and they seemed to be happy with my progress. They just gave me a couple of things to work on, not too bad.

So things are moving right along, slowly but surely. As much as I would LOVE to be back at home I have decided that the longer I am here, probably the better. The LAST thing that I want to have happen is for them to discharge me home and then have some kind of relapse and end up back here. That would really suck. I would rather stay here a bit longer and know that I am gonna be okay. Seems like the better choice.

Today I think I will leave you with that. I do want to do a couple of updates about some of what my parents said I went through. I think it's important that people know just how scary and sick this whole thing can be, but I will save that for another day. I'm tired and just wanted to do a quick update, but nothing I do seems to be quick. LOL I promise to keep you all updated as I get better, stronger and learn more. Oh....one thing I do want to leave you with. My MS is better! It's not gone, I do have some little things that I had before but the BEST thing ever is NO headaches. I had some type of headache everyday for at least the last 3 years and sometimes even migraines. I have only had one VERY mild headache that was gone in an hour since the transplant. I'm SO pleased!

Anyway, I hope this finds all of you doing well. Take care! :)