So, in January I went off Prednisone-for good-finally! A year late-but defiantly worth the wait! I thought I was rejection/having more problems with restriction in my heart like I had in December went I went off the Pred., so I had an "emergency" heart biopsy for the next morning, but it showed up with the same results I have when I take my small maintenance dose (5 mg) of Prednisone (I got a 1R/1R-so still rejection). This was finally the good news I have been waiting a year for. I was supposed to come off the Prednisone last January, but because of my rejections and inflammation issues I had to go on many tapering's of it. I don't have to go back to the transplant offices until March/April and I don't have to have another biopsy until November (or unless the Allomap gives faulty results-I am not a fan of Allomap-it is a relatively new test and is still working out its kinks and I never get good results. But, hopefully since I am off the prednisone I will start getting better Allomap results).
A few weeks after the biopsy I started feeling better-it takes awhile for me to feel better after getting tapered off the prednisone-it is pretty hard on your body. I started riding my bike more, and I signed up for Team in Training to ride 100 miles in June!-a century ride! I am getting to do something that I have always wanted to do and something that most people don't have time to do. I am loving cycling and exercising! I got into cycling because it was the only exercise that was not hurting my back (laying on my back for hours during and after surgery hurt my back), but I was finally able to get a shot in my spine and it HELPED! so, I am able to do more walking an do different excercising.
I am working in speech therapy on my memory and hopefully that will help me. I don't know about it so far, but the brain is elastic so I am trying to work it out more and hopefully it will come back soon. I am taking one class this semester just as practice for next semester at SMU.
It is getting exciting to a.) be getting healthier, and b.) getting used to everything and just get into my routine and c.) being able to move on with life! I am getting more used to everything transplant related (like meds causing me to be nauseous, the pain in my legs, my migraines, and my memory). I haven't updated this in so long because I have been so busy and I am filling up my days again!
Showing posts with label memory. Show all posts
Showing posts with label memory. Show all posts
Thursday, February 10, 2011
Sunday, January 9, 2011
Pump Head
01/09/2011 Pump Head
So I guess I have been in a writing mood lately because I think this is the third day in a row that I have written, usually I start out reading friends blogs and commenting, but lately I have been riding a lot-and when I ride I get lots of deep thoughts and this is sort of the therapy.
So from the heart transplant surgery I got developed this condition (that will go away over time) called pump head-that's it's real name-you can look it up on wikipedia, isn't it such a vulgar name? Basically what it is, is memory loss-of different kinds (short and long term) caused by the surgery-when I was on the heart lung machine. There are many theories what actually goes wrong with the pump, one of the things is that your red blood cells are crushed when they go through the pump and are ruined-but there are many other theories.
Anyways-I am talking about this for a reason. For awhile I have noticed that it is so weird the things I actually am remembering/remember. I have forgotten many things from my long term memory, it somewhat feels like I have a slight amnesia-I know the basic things like my name, family, etc. But some things that I expect myself to remember I am not remembering. They kind of catch me off guard because I just don't expect it and I am always surprised.
I have gone to church for my whole life and this morning we were singing songs in church that I have sang my whole life, but I could not remember the words, I had to read them from the screen. It was it kind of made me all the sudden evaluate my life and what I really value. I am having no problem telling people about medical crap-sorry, but I can real off a whole load of stuff, it took me 2 days to remember 20 medications I had never heard of (the dosage, why I took them, and when I took them, etc.) (and I am not just talking about knowing medications-I am a nursing student so just knowing about general stuff going on) but I totally am forgetting verses that I have always known-I just draw a blank.
I know it is important to know about my health, but it made me think that I also need to put a lot more time in reading the word. It is so weird how it took this pump head to figure this out.
So I guess I have been in a writing mood lately because I think this is the third day in a row that I have written, usually I start out reading friends blogs and commenting, but lately I have been riding a lot-and when I ride I get lots of deep thoughts and this is sort of the therapy.
So from the heart transplant surgery I got developed this condition (that will go away over time) called pump head-that's it's real name-you can look it up on wikipedia, isn't it such a vulgar name? Basically what it is, is memory loss-of different kinds (short and long term) caused by the surgery-when I was on the heart lung machine. There are many theories what actually goes wrong with the pump, one of the things is that your red blood cells are crushed when they go through the pump and are ruined-but there are many other theories.
Anyways-I am talking about this for a reason. For awhile I have noticed that it is so weird the things I actually am remembering/remember. I have forgotten many things from my long term memory, it somewhat feels like I have a slight amnesia-I know the basic things like my name, family, etc. But some things that I expect myself to remember I am not remembering. They kind of catch me off guard because I just don't expect it and I am always surprised.
I have gone to church for my whole life and this morning we were singing songs in church that I have sang my whole life, but I could not remember the words, I had to read them from the screen. It was it kind of made me all the sudden evaluate my life and what I really value. I am having no problem telling people about medical crap-sorry, but I can real off a whole load of stuff, it took me 2 days to remember 20 medications I had never heard of (the dosage, why I took them, and when I took them, etc.) (and I am not just talking about knowing medications-I am a nursing student so just knowing about general stuff going on) but I totally am forgetting verses that I have always known-I just draw a blank.
I know it is important to know about my health, but it made me think that I also need to put a lot more time in reading the word. It is so weird how it took this pump head to figure this out.
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