Well it's been a week of countdowns:
31 days 14 hours & 47 minutes till Norad tracks Santa.
2 and a half weeks until my cousin & Aunt visit from Canada - i'm so excited, seems like forever since i've seen my them. We've been quite lucky in the past as it's not been as rare occurance for us to see each other as you think. My Aunt is a jet setting exec so we get to see her a couple of times a year. My cousins & uncle we see every few years. But we are a small family Mum only has one sister & Dad was an only child so it's great when we see each other.
The other countdown ended yesterday. Since April i've been on a clinical trial for a drug called DCA. The way DCA is supposed to work is that it's a drug already used for canceer treatment, Pulmonary hypertension shares some trates with cancer in that the arteries are narrowed by excess cell growth. The hope was that DCA would stop this cell rapid cell growth and in some cases reverse it. It has worked in White Mice.
So since April i've been travelling up to Hammersmith hospital in London every four weeks (it was every two weeks in the first 6 weeks) to go through blood tests, walk tests, and much prodding and poking. To limit the disruption on work & poor Joss having to take time off work (often unpaid) quite a few of the visits were on the weekend. To say it's been tiring is an understatement, and I have to say I am sighing a huge sigh of relief now that the trial has ended. For the first time in three years since diagnosis I felt that I was fitting my life round this disease, and it was just constant. I'm one of the lucky ones with this disease in that 85% of the time I forget i've got it, going to the hospital so frequantly was a constant reminder.
So did we achieve anything from the study?? well scientifically speaking nope, all the tests showed no significant change. However do I feel better taking it YES YES YES!!! It has given me more energy and I can do stairs better. So they are keeping me on it for another 6 months (on a month by month basis - they'll call me once a month to check everythings ok), luckily I only have to go back at the 6 month point for a Right Heart Catheter to see if there's any change in pressure in my lungs.
So that was my week, except for a fun night last Friday which involved a couple of Mojitos.
The Christmas celebrations are nearly upon us, i'm sure they start earlier every year! over the next few weeks running up to Christmas we have a lot of Christmas events on...... can't wait, I love Christmas.
Bye for now blogsphere, have a good week x
Thursday 22 November 2012
Tuesday 13 November 2012
40 days 13 hours & 40 minutes.......
40 days 13 hours & 40 minutes is how long before Norad starts traking Santa -Woop Woop can't wait.
Last week wasn't very exciting at all, it was mainly work work and more work. For those who don't know I work in the Finance department of a charity which rehabilitates ex-offenders. It has been quite challenging recently, and very busy. But I like what I do so it's not too tough doing a weeks work. Some people are quite suprised that i'm still able to work full time with my condition, but at the moment i'm well enough and it takes my mind off things. It's amazing how good it feels to have a bit of "normal" in my life sometimes.
Films watched last week were Mission impossible 3 & Killer Elite. Both were good, the later had more storyline than I was expecting for a Jason Statham film.
It was Mums Birthday yesterday so me and Natalie spent Sunday making Lemon Cupcakes and scones. We had such a laugh decorating them, I think we missed out on an artistic gene!!!
But they taste good so think I got a baking gene.
My only medical appointment this week was an INR blood test. For those who don't know an INR blood test measures clotting levels in the blood. Because I have PH I have to take warfarin which thins the blood to prevent blood clots. Warfarin is a very awkward tablet to take as the amount you have to take depends on your INR, so it means constantly having blood tests to measure INR levels, and then dose changes to amend your INR level. At the moment blood tests seem to be every 4 weeks, at one time they were every week, when i'm stable they can be as far apart as 8 weeks. It's really annoying as your INR can be affected by so many things like food containing vitamin K, other drugs being taken, or even the weather.
It's an exciting week in the Pegram house as it's Grand Slam of Darts week. I love me darts, know all the songs, and walk on music. My favourite player is James Wade, although I do like Phil "The Power" Taylor. We get to meet James Wade and a selection of other players in December as we are going to an exhibition match in Portsmouth, we even splashed out and bought VIP tickets which includes player meet & greet, i'm so excited already I could burst!!!!!
Have a good week people of Blogsphere x
Last week wasn't very exciting at all, it was mainly work work and more work. For those who don't know I work in the Finance department of a charity which rehabilitates ex-offenders. It has been quite challenging recently, and very busy. But I like what I do so it's not too tough doing a weeks work. Some people are quite suprised that i'm still able to work full time with my condition, but at the moment i'm well enough and it takes my mind off things. It's amazing how good it feels to have a bit of "normal" in my life sometimes.
Films watched last week were Mission impossible 3 & Killer Elite. Both were good, the later had more storyline than I was expecting for a Jason Statham film.
It was Mums Birthday yesterday so me and Natalie spent Sunday making Lemon Cupcakes and scones. We had such a laugh decorating them, I think we missed out on an artistic gene!!!
My only medical appointment this week was an INR blood test. For those who don't know an INR blood test measures clotting levels in the blood. Because I have PH I have to take warfarin which thins the blood to prevent blood clots. Warfarin is a very awkward tablet to take as the amount you have to take depends on your INR, so it means constantly having blood tests to measure INR levels, and then dose changes to amend your INR level. At the moment blood tests seem to be every 4 weeks, at one time they were every week, when i'm stable they can be as far apart as 8 weeks. It's really annoying as your INR can be affected by so many things like food containing vitamin K, other drugs being taken, or even the weather.
It's an exciting week in the Pegram house as it's Grand Slam of Darts week. I love me darts, know all the songs, and walk on music. My favourite player is James Wade, although I do like Phil "The Power" Taylor. We get to meet James Wade and a selection of other players in December as we are going to an exhibition match in Portsmouth, we even splashed out and bought VIP tickets which includes player meet & greet, i'm so excited already I could burst!!!!!
Have a good week people of Blogsphere x
Sunday 4 November 2012
wooosh banggg wizzzz (and that's just the noise my heart makes)
Well People of the blogsphere - the temptation to start my blog "stardate 03112012" is getting too much to resiste.
Firstly on the work front we learnt we were losing 2 people from our office this week. Both not unexpetcted, and both are moving on to bigger and better things which they both deserve cause they are 2 of the nicest people, I'm really happy for both, but they will be missed - Good luck Mr R & Ms S!!!!
I have already written this blog once but i'm starting again. My previous effort was a technical explaination of my hospital visits throughout the week, I may post it at a later date but thought i'd give you a more "feelings" version.
I've had 3 hospital visits this week, 4 weekly clinical trial visit at Hammersmith, Annual JR check up, and lastly my first visit to Harefield transplant clinic. The visit to the JR was fine, although considering one of the reasons I go is so they can keep track of my notes they don't seem to be doing very well, the last notes from the Hammersmith they had on file were from last December!!
To say I was scared about my appointment on Friday at the Transplant clinic is a slight understatement.... I had to use every bone and sane thought in my body not to beg Joss to take me home while we were waiting to be seen.
The morning was spent doing tests; firstly an Echo - the Dr doing the scan said although the right side of my heart is enlarged it danced nicely :-) Next was a chest Xray, followed my an ecg, and finally lung function tests (basically breathing into a tube and taking three big breaths). Then after lunch we saw the transplant registrar, and then the consultant. We also met the lovely transplant co-ordinators. It is all very very scary. Transplant is such a big word to get your head round when 98% of the time you feel fine.
I'm the worlds most undecisive person but with this I 100% know what my feelings are for now, which for me is very unusual. But decisions are a while off yet, I have to go back in February for more tests, who'd have ever thought that there are so many different criteria and reasons why some people can't have transplant. But i'm hopeful they'll say i'm too well for transplant as that's what my PH consultant (and me) thinks. Transplant isn't a straightforward cure, there are numerous issues that happen afterwards.
Anyway that's enough about trnasplant & hospitals for now, couple of weeks off hospital visits now. We've just got back from fireworks with the family. It was great to see everyone, I need to put more effort into seeing them more often. The fireworks were a bit feeble but fun. We managed to get through 50 sparklers, i've always loved sparklers since I was little.
Now watching Sunday night TV, the only thing I watch while it's actually aired is Strictly results. I love Donwton & Homeland but I sky+ these.
You now get Movember watch on my blog.... Joss is growing a mustache for Movemeber, day 4 and it's just about coming through, stlye is yet to be decided.
Have a good week all x
Firstly on the work front we learnt we were losing 2 people from our office this week. Both not unexpetcted, and both are moving on to bigger and better things which they both deserve cause they are 2 of the nicest people, I'm really happy for both, but they will be missed - Good luck Mr R & Ms S!!!!
I have already written this blog once but i'm starting again. My previous effort was a technical explaination of my hospital visits throughout the week, I may post it at a later date but thought i'd give you a more "feelings" version.
I've had 3 hospital visits this week, 4 weekly clinical trial visit at Hammersmith, Annual JR check up, and lastly my first visit to Harefield transplant clinic. The visit to the JR was fine, although considering one of the reasons I go is so they can keep track of my notes they don't seem to be doing very well, the last notes from the Hammersmith they had on file were from last December!!
To say I was scared about my appointment on Friday at the Transplant clinic is a slight understatement.... I had to use every bone and sane thought in my body not to beg Joss to take me home while we were waiting to be seen.
The morning was spent doing tests; firstly an Echo - the Dr doing the scan said although the right side of my heart is enlarged it danced nicely :-) Next was a chest Xray, followed my an ecg, and finally lung function tests (basically breathing into a tube and taking three big breaths). Then after lunch we saw the transplant registrar, and then the consultant. We also met the lovely transplant co-ordinators. It is all very very scary. Transplant is such a big word to get your head round when 98% of the time you feel fine.
I'm the worlds most undecisive person but with this I 100% know what my feelings are for now, which for me is very unusual. But decisions are a while off yet, I have to go back in February for more tests, who'd have ever thought that there are so many different criteria and reasons why some people can't have transplant. But i'm hopeful they'll say i'm too well for transplant as that's what my PH consultant (and me) thinks. Transplant isn't a straightforward cure, there are numerous issues that happen afterwards.
Anyway that's enough about trnasplant & hospitals for now, couple of weeks off hospital visits now. We've just got back from fireworks with the family. It was great to see everyone, I need to put more effort into seeing them more often. The fireworks were a bit feeble but fun. We managed to get through 50 sparklers, i've always loved sparklers since I was little.
Now watching Sunday night TV, the only thing I watch while it's actually aired is Strictly results. I love Donwton & Homeland but I sky+ these.
You now get Movember watch on my blog.... Joss is growing a mustache for Movemeber, day 4 and it's just about coming through, stlye is yet to be decided.
Have a good week all x
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