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Day 23.....tapering off steroids! YAY!!!

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. 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! :)


Rami said...

Jamie I start the pre-tests next Wed., I go in for chemo right after Thanksgiving & the plan is to get out right before Xmas so I can spend it with my family at Pete Gross. Do you think I'll be up to it if I am just getting out like two days before?


Jaime said...

Hi Rami! Sorry I have not called you yet. I plan to do so as soon as I get a bit voice is still a bit shaky. Anyway, I think it is hard to say because we are all so different. I know when I first got out of the hospital I was so weak that I kind of felt like "Am I ever gonna feel good again" Not to mention I didn't have taste buds. More than anything it all just takes time. I also think it will depend on how you do in the hospital as to how long you are in the hospital. I was in for 20 days and told that I got out earlier than some of the others. This whole process really is one of those things where you have to take it day by day.

I am happy to hear you will be staying at Pete Gross House. They are wonderful. Actually you will find out soon that everyone in this process is wonderful. They really know what they are doing and I am so grateful to each one of them....from the transplant clinic staff to the nurses in the hospital to the staff at Pete Gross. They really help make this difficult time much easier.

Do you know what team you are on yet? I am on the Violet team and can tell you they are fantastic. I can't say enough good about any of them. So, is Wednesday your arrival at SCCA? If I am still here it would be nice to meet you. When do you come to the Pete Gross House? I have been here since August 3rd and it looks like I will be going home in the next week and a half or so. Things are really just moving right along.

Anyway, when I get a little bit stronger I will give you a call.


rami said...

I do arrive Wed. & would love to meet you. I'll be there starting Wed. for about 10 days. Call me & let me know a good time to meet when you feel up to it.


Jaime said...

Hi Rami! I will give you a call once you get here. Probably Thursday, will kind of depend on how I'm feeling and my clinic schedule. Are you staying at the Pete Gross House starting on Wednesday? They are wonderful! Everyone is actually as you will soon discover.

One thing I think it's important to note, things change very quickly here. I would not count on any specific time period. When I first came for my work-up I was hopeful I would be able to go back and forth from Seattle to home. It didn't happen that way. I was here a week, got a weekend home then was here for about 3 weeks before I got to go home again. Then I have been here non-stop. We are all so different and how your schedule goes will all be determined on a week to week basis, which will depend on how you respond to various tests and what your results are. For example, my Apheresis took 2 days, there are some who have taken 4 and 5 days. There is just no way to know how your body will react to the procedure and the GCSF until you get there. My best advice would be to just take things a week at a time and once you get into it one day at a time. This will help reduce any unneeded stress. Plan on being here for a few months and when it comes to the chemo schedule and getting out of the hospital, that will all depend on how you do.

I wish you the very best with this and look forward to hearing how you are doing.

Take care,

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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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