Hey all
i haven't been writing much the past few weeks, but i have been checking the boards and reading up on mostly everything
Just thought i'd let you all know what is going on overhere.
Don't know if i already told you but my pft's were the same as in june when i was in clinic. 1.30 and they were 1.28 back then. 1.30 is 45% for me. Not really high but i'm happy that they were the same. I have a new puffer, Spiriva, now. Going to try that the first time tomorrow. Hopefully that will make my pft's go up a bit more. I had Serevent till now.
I got a few results from the 1 year check-up last friday. My kidneyfunction was ok! I don't know if i had already told that with my check-up 2 weeks ago we found that my Creatinine had gone up? But that was why i was a little worried for my kidneys. But the big test showed they they work for 57% and last februari that was 61%, that difference is nothing really as that is what the 'faults' in the test can be i think.
In september last year, just after my tx, they were 31% all of a sudden, from being 83% at my assesment in november 2005. So that was very bad. They changed my prograft dose and my antifungal meds and that helped cause they were back up again a few months later, thankfully.
I got some bloodresults back too. And it showed that EBV (Epsteinn Bar virus) is acting up again.. Same as in februari but then it was 10.000 at most i think and now it was 20.000. So that's a lot more, but not too alarming still. I have to let it get checked again in 4 weeks from now and hope it has not gone up more and hopefully went down. As a severe complication from it could be PTLD (?) Post Transplant Lymfoma).
EBV causes symptoms and those symptoms are called Mono, or kissingdesease.. So i now know why i have been sooo tired the past 2 weeks. I wake up very tired and can't do much at night. Even when i haven't done that much during the day. I have to take it easy for a bit so my body can fight this. So i'm not doing a lot, as if i did that before :S
I felt a bit down last week.. Was quiet.. could cry because of everything.. felt like doing nothing, felt a bit depressed..
It is better now, since about saturday..
Linda, a really really good friends of mine past away 5 years ago last friday.. She was going through my mind soo much the past week, but i didn't really think of that date.. Just the night before is when i knew.
It was strange, like in the back of my head i knew it was coming.. She is on my mind a lot, but not 10 times a day like the past week.
Linda was only 17 when she passed away, far too young.. She called the hospital her home the last 2 years of her life... I went to visit her as much as i could. I had been to see her the saturday before she died and we would go again on wednesday a week later. But we decided to go earlier, the next saturday. We were at my grandmother the night before because she lives a bit closer.. But that saturday morning i was called and the nurse said i couldn't come.. That Linda was very sick...
We drove home later early afternoon and about an hour after i got home the phone rang.. I knew what it was going to be about... I had been alone in my room since is we were home, just doing nothing, but think of her. My mom came to my room and we didn't say a thing.. just cried so hard and so long...
Thinking about her has become easier. It's been 5 years.. I haven't been crying as much anymore, and think of the happy memories that we shared more and more. The sad memories have gone to the background, but ofcourse they still are here and come ones in a while..
Sorry this has gotten so long, think i needed to vent/talk about it for a bit.
Lots of love!
i haven't been writing much the past few weeks, but i have been checking the boards and reading up on mostly everything
Just thought i'd let you all know what is going on overhere.
Don't know if i already told you but my pft's were the same as in june when i was in clinic. 1.30 and they were 1.28 back then. 1.30 is 45% for me. Not really high but i'm happy that they were the same. I have a new puffer, Spiriva, now. Going to try that the first time tomorrow. Hopefully that will make my pft's go up a bit more. I had Serevent till now.
I got a few results from the 1 year check-up last friday. My kidneyfunction was ok! I don't know if i had already told that with my check-up 2 weeks ago we found that my Creatinine had gone up? But that was why i was a little worried for my kidneys. But the big test showed they they work for 57% and last februari that was 61%, that difference is nothing really as that is what the 'faults' in the test can be i think.
In september last year, just after my tx, they were 31% all of a sudden, from being 83% at my assesment in november 2005. So that was very bad. They changed my prograft dose and my antifungal meds and that helped cause they were back up again a few months later, thankfully.
I got some bloodresults back too. And it showed that EBV (Epsteinn Bar virus) is acting up again.. Same as in februari but then it was 10.000 at most i think and now it was 20.000. So that's a lot more, but not too alarming still. I have to let it get checked again in 4 weeks from now and hope it has not gone up more and hopefully went down. As a severe complication from it could be PTLD (?) Post Transplant Lymfoma).
EBV causes symptoms and those symptoms are called Mono, or kissingdesease.. So i now know why i have been sooo tired the past 2 weeks. I wake up very tired and can't do much at night. Even when i haven't done that much during the day. I have to take it easy for a bit so my body can fight this. So i'm not doing a lot, as if i did that before :S
I felt a bit down last week.. Was quiet.. could cry because of everything.. felt like doing nothing, felt a bit depressed..
It is better now, since about saturday..
Linda, a really really good friends of mine past away 5 years ago last friday.. She was going through my mind soo much the past week, but i didn't really think of that date.. Just the night before is when i knew.
It was strange, like in the back of my head i knew it was coming.. She is on my mind a lot, but not 10 times a day like the past week.
Linda was only 17 when she passed away, far too young.. She called the hospital her home the last 2 years of her life... I went to visit her as much as i could. I had been to see her the saturday before she died and we would go again on wednesday a week later. But we decided to go earlier, the next saturday. We were at my grandmother the night before because she lives a bit closer.. But that saturday morning i was called and the nurse said i couldn't come.. That Linda was very sick...
We drove home later early afternoon and about an hour after i got home the phone rang.. I knew what it was going to be about... I had been alone in my room since is we were home, just doing nothing, but think of her. My mom came to my room and we didn't say a thing.. just cried so hard and so long...
Thinking about her has become easier. It's been 5 years.. I haven't been crying as much anymore, and think of the happy memories that we shared more and more. The sad memories have gone to the background, but ofcourse they still are here and come ones in a while..
Sorry this has gotten so long, think i needed to vent/talk about it for a bit.
Lots of love!