Since coming off the gut steroid Budesonide I've been feeling a bit rough, lot of nausea and stomach cramps as though I'm full all the time but I've hardly been eating; at least not anywhere near as much as I normally do. The Doctors were worried it was the graft vs host in my gut coming back but it looks like its just side-effects from the steroids, they took a sample off me and as far as I'm aware that came back fine. At least I've actually been feeling hungry for the first time in ages, even though theres not a lot I want to eat.
The most worrying thing happened the the other day, I woke up and the vision in my right eye had a great big dark patch over it and was just totally blurry. I didn't think much of it at the time because I tend to get blurry vision when I'm tired but it persisted for 2 more days so I called it in on Sunday and went in to Hospital for a review. The registrar there thought that it might be CMV virus behind the eye but decided that I need to see an Optomotrist for a specialist opinion, if it was the CMV then I'd be admitted and put on the Phosgarnate (a nasty drug that wrecks my kidneys). So I went down to the eye hospital and saw the Doctor there and she wasn't quite convinced it was CMV since it's come on so quickly so I was spared Hospital admission for the night and told to come back tomorrow to see a consultant who was more experienced. I had 4 people look in my eye and they all concluded it wasn't CMV, which was good news, and that it was a bleed in the back of my eye since my platelets have been sitting so low recently. This spares me sleeping at hospital and having nasty drug, but it does mean I have to go in every day for a blood check to see what my platelets are. That's a bit of a bitch seeing as this week I have a Physio appointment AND my University registration but hopefully I can work it round all that somehow.
So yeah I was pretty worried, especially when the Doctor told me if it is CMV then the scar left behind would probably mean my vision was buggered for good. Hopefully that's not the case with just a bleed but they did say it could days or months for my vision to returns to normal.
Tuesday, 22 September 2009
Friday, 11 September 2009
Day +126: Down to me now really
After my last clinic appointment I'm down to taking 5 different medications.... instead of about 15. I'm off all the steroids, not taking any of the magnesium or potassium supplements and soon they're going to start taking down my immune suppression medicine which means my immune system should be able to start fighting for itself and get rid of the virus' I have once and for all. Yes I've still got the CMV and Epstein-Barr virus, but the virus counts are very low and once the immune suppression meds start to come down they'll, hopefully, vanish on their own.
I went in to hospital last Monday, normally I have blood taken, wait ages, see a Doctor, tell them there's nothing wrong, then we leave hours later. This time they just took the blood, I filled out a form to say there was nothing I wanted to see a Doctor about and that was that, back home in time for tea and crumpets. Obviously a good sign that they're happy with the way every thing's going, still it feels weird moving on to this stage, a little disconcerting, you feel like you're really being cut loose but it's definitely a good thing.
So how's the coming down off the steroids going? Alright, the insomnia's still really wrecking me, coupled with the fact I'm alone a lot of the day at the moment with very little to do it can really get you down. For instance having been awake now since 5am, with everybody else asleep I start to feel pretty edgy and anxious. Same when every one's at work or Uni and I'm stuck in the house, still diazapam and the relaxation exercises help and I'll be back at University fairly soon working my ass off to get my degree anyway. Another thing I'm a little anxious about, but that is another three weeks away and if I look at where I was three weeks ago... I've come a long way alright, I think by the time Uni really starts I'll be ready for it. It's going to take a lot of getting used to, but I'll manage.
I was thinking back to when we had to make the decision whether to go for a Bone Marrow Transplant or just go the chemotherapy route and I definitely think we should have been made more aware of the recovery process after the transplant. I don't regret the transplant at all but if I didn't have my girlfriend and my family to support me through the recovery it just wouldn't be possible, if I had a teenager or young adult going through this kind of recovery without the right support I'd be terrified they'd self-harm or worse. I think I might try and volunteer at the hospital when I feel up to it, if they'll let me, see if they'd want somebody who could talk to people about the experience. I'd never want to put anyone off it, it's saved my life but the at the end of the day this stage was never really talked about and it's been the hardest thing I've ever been through.
I went in to hospital last Monday, normally I have blood taken, wait ages, see a Doctor, tell them there's nothing wrong, then we leave hours later. This time they just took the blood, I filled out a form to say there was nothing I wanted to see a Doctor about and that was that, back home in time for tea and crumpets. Obviously a good sign that they're happy with the way every thing's going, still it feels weird moving on to this stage, a little disconcerting, you feel like you're really being cut loose but it's definitely a good thing.
So how's the coming down off the steroids going? Alright, the insomnia's still really wrecking me, coupled with the fact I'm alone a lot of the day at the moment with very little to do it can really get you down. For instance having been awake now since 5am, with everybody else asleep I start to feel pretty edgy and anxious. Same when every one's at work or Uni and I'm stuck in the house, still diazapam and the relaxation exercises help and I'll be back at University fairly soon working my ass off to get my degree anyway. Another thing I'm a little anxious about, but that is another three weeks away and if I look at where I was three weeks ago... I've come a long way alright, I think by the time Uni really starts I'll be ready for it. It's going to take a lot of getting used to, but I'll manage.
I was thinking back to when we had to make the decision whether to go for a Bone Marrow Transplant or just go the chemotherapy route and I definitely think we should have been made more aware of the recovery process after the transplant. I don't regret the transplant at all but if I didn't have my girlfriend and my family to support me through the recovery it just wouldn't be possible, if I had a teenager or young adult going through this kind of recovery without the right support I'd be terrified they'd self-harm or worse. I think I might try and volunteer at the hospital when I feel up to it, if they'll let me, see if they'd want somebody who could talk to people about the experience. I'd never want to put anyone off it, it's saved my life but the at the end of the day this stage was never really talked about and it's been the hardest thing I've ever been through.
Saturday, 5 September 2009
Day +120: Line out
It's been 120 days since my transplant, and a suprising 261 days since I was first diagnosed and I've finally had my central line removed, for anyone who doesn't know what that is it's the tube they've been using the last 200 days to take blood and give me chemo, but since I've hardly had blood in the last three months and I don't have chemo anymore it's out, and it feels good.
It took some persuading of the Doctor's to actually get it done, they kept umming and ahhing because my platelates were low but in the end I just told them that both of my consultants had said get it out so they did it. It was a long day, since I had to have a platelet transfusion first, then then line out, then some pentamadine, which never makes me feel great. It's a gas mask i've got to wear for about 20 minutes, some kind of antimicrobial gas to keep away infections and that. I can't say I'm feeling exstatic about the line being out yet, once the stiches are out and my platelets are up again maybe, right now its just a bit sore and i still feel a bit wary about touching it, but its great to have it out.
My CMV virus counts are still negative so no nasty anti-viral drugs to drag my blood counts down, hopefully they'll keep going up and up now, it's only the cyclosporin that's possible taking them down.
I'm feeling pretty down at the minute, I'm finding it very hard to stay motivated with the exercise when I cramp up so easily and finding it REALLY hard to enjoy anything I used to enjoy, by virtue of the steroids and lack of sleep I suppose. I've been told to try and stay awake during the day to combat the insominia, that's going to be pretty tough, when you're sleeping from 10:30 til 3:30am, maybe I should start going to bed at 9:30 for now.
Still I feel a lot better than I did three weeks ago so hopefully, again in the next three weeks when Uni starts I'll be almost back to normal. Not quite sure how fitting the timetable around hospital visits is going to work, I think I'm going to end up pissing off a lot of Doctor's. Got a feeling I'm going to be going in early for bloods then leaving pronto for classes and just telling them to phone me if there's any problems, considing I never have ANYTHING to tell them I can't reallyy see why this would be a problem, obviously I'd go to clinic appointments and I'm pretty sure I'm going to have freerange to choose my timetable anyway.
Right it's 5:21 and I'd really like to get some more sleep, though I think this probably unlikely we'll see.
It took some persuading of the Doctor's to actually get it done, they kept umming and ahhing because my platelates were low but in the end I just told them that both of my consultants had said get it out so they did it. It was a long day, since I had to have a platelet transfusion first, then then line out, then some pentamadine, which never makes me feel great. It's a gas mask i've got to wear for about 20 minutes, some kind of antimicrobial gas to keep away infections and that. I can't say I'm feeling exstatic about the line being out yet, once the stiches are out and my platelets are up again maybe, right now its just a bit sore and i still feel a bit wary about touching it, but its great to have it out.My CMV virus counts are still negative so no nasty anti-viral drugs to drag my blood counts down, hopefully they'll keep going up and up now, it's only the cyclosporin that's possible taking them down.
I'm feeling pretty down at the minute, I'm finding it very hard to stay motivated with the exercise when I cramp up so easily and finding it REALLY hard to enjoy anything I used to enjoy, by virtue of the steroids and lack of sleep I suppose. I've been told to try and stay awake during the day to combat the insominia, that's going to be pretty tough, when you're sleeping from 10:30 til 3:30am, maybe I should start going to bed at 9:30 for now.
Still I feel a lot better than I did three weeks ago so hopefully, again in the next three weeks when Uni starts I'll be almost back to normal. Not quite sure how fitting the timetable around hospital visits is going to work, I think I'm going to end up pissing off a lot of Doctor's. Got a feeling I'm going to be going in early for bloods then leaving pronto for classes and just telling them to phone me if there's any problems, considing I never have ANYTHING to tell them I can't reallyy see why this would be a problem, obviously I'd go to clinic appointments and I'm pretty sure I'm going to have freerange to choose my timetable anyway.
Right it's 5:21 and I'd really like to get some more sleep, though I think this probably unlikely we'll see.
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