Back from Respirologist
Well I am back and on a prednisone burst and taper.....yay (not)
I feel so bad that I am hoping that it works. I phoned his office on monday and didn't hear anything back, so I found his email address and sent him an email and he had his secretary call within 20 mins ( kind of impressive) he booked me in for a chest xray and and blood gases. Xray looks okay but my o2 levels are down. So he wants to get me down to Toronto to meet with the transplant assessment team and get that going while we wait to hear about the rituximab.
So now I have to start keeping an eye on my o2 levels more often and get hold of him if they drop any more. But I don't think he gives many scripts for the burst and taper, cause the instructions on the bottle were to take one 50mg per day for 2 weeks........and I was thinking and then what? I guess its a good thing I've done this before.....
I just hope it gives me enough energy to be able to enjoy the play next week with my daughter, cause one day i will feel okay and the next I am down for the count......it seems to be sucking the joy out of me too. I think I've been doing pretty good emotionally with this for the most part and these last 3 weeks have been the pits. It is like all the light is gone, and it really sucks cause this is my favourite time of year, I really want to enjoy everyday, or at the very least enjoy part of everyday like I used to.
I hate the prednisone but I hope it brings my happy back. I had a friend stop by last night with her daughter who is good friends with my daughter and had a good visit and we went through 2 clothes baskets of stuff that I had cleaned out of my closet (I am a clothes horse and hold on to things too long) So they went home with the big basket, so now I just have to pack up the small one and have hubby drop it off at the goodwill, one small thing done anyway.
Enough for now going to read my new book on nutrition....maybe it will help my stomach and improve my outlook.......
I feel so bad that I am hoping that it works. I phoned his office on monday and didn't hear anything back, so I found his email address and sent him an email and he had his secretary call within 20 mins ( kind of impressive) he booked me in for a chest xray and and blood gases. Xray looks okay but my o2 levels are down. So he wants to get me down to Toronto to meet with the transplant assessment team and get that going while we wait to hear about the rituximab.
So now I have to start keeping an eye on my o2 levels more often and get hold of him if they drop any more. But I don't think he gives many scripts for the burst and taper, cause the instructions on the bottle were to take one 50mg per day for 2 weeks........and I was thinking and then what? I guess its a good thing I've done this before.....
I just hope it gives me enough energy to be able to enjoy the play next week with my daughter, cause one day i will feel okay and the next I am down for the count......it seems to be sucking the joy out of me too. I think I've been doing pretty good emotionally with this for the most part and these last 3 weeks have been the pits. It is like all the light is gone, and it really sucks cause this is my favourite time of year, I really want to enjoy everyday, or at the very least enjoy part of everyday like I used to.
I hate the prednisone but I hope it brings my happy back. I had a friend stop by last night with her daughter who is good friends with my daughter and had a good visit and we went through 2 clothes baskets of stuff that I had cleaned out of my closet (I am a clothes horse and hold on to things too long) So they went home with the big basket, so now I just have to pack up the small one and have hubby drop it off at the goodwill, one small thing done anyway.
Enough for now going to read my new book on nutrition....maybe it will help my stomach and improve my outlook.......
Replies
I would love for you to read Dr. Weil\'s, \"Spontaneous Healing.\" It is older so you may have to look for it at a used book store. Amazon may have it for download. It\'s a great book that a friend recommended to me when I first joined the site and I go back to it all the time. It gave me hope when I felt none.
I could have written your middle paragraph a week ago. I was so sick and that bad reaction just made everything bleak. This is my favorite time of year also. I just love the smell of fall. The colors, beautiful. I want to go on a hike so bad, but I don\'t have the energy.
I\'m so sorry you have to up the prednisone and taper, that is so hard. I know I could go back on it, but I will fight with everything I\'ve got not to. Sometimes we just have no choice in the matter. I think you need it right now. Hopefully it will kick anything that may have been stirring to cause the setback.
Sending lots of positive energy your way. Love ya, Kim