sleigh bells ring

Well sorry blogsphere I have been a bit lapse in writing my blog.

Today is the 27th December Christmas has been & gone.

Well what has happened since 10th December?? it seems so long ago. I think our last story ended with the relatives about to arrive from Canada. It was a really lovely visit from my Aunt & Lisa, although was slightly mared my colds, IBS & a bad infusion site and my PH not playing ball.

While they were here we visited Granny, went out for lunch & went to Blenheim palace. It was nice just to spend time with them, just wish I could have spent more time with them.

Blenheim at Christmas

Aunty, Me, Granny, Mum, Natalie & Lisa

I've had a few infusion site issues recently, firstly I woke up one morning to find i'd pulled my site out in the night, it looked like a scene from the Texas chainsaw masacre. Then the new site I chose formed a blister, then the third site got infected. Fingers crossed the site that I now have is fine. I had a really painful Christmas Eve and was not looking forward to Christmas Day in so much pain. Thankfully Father Christmas gave me the gift of a fairly pain free day.

Christmas was also quite traumatic as on Christmas Eve my Gran had to be evacuated from her house and moved into a residential care home. We're all hoping that she settles in well as we're not sure what the future holds regarding her property and her ability to live in her own home anymore. It was a really tough decision for my Mum to make. It has lead to quite a stressful time for Mum and I'm nt sure how she got through entertaining on Christmas day & Boxing day.

Christmas day was lovely and I got some really nice pressies. We spent the day at Mum & Johns with my sister, granny, step sister her husband, his mum, and my twin nephews. Christmas lunch was fantastic as usual. We had crackers with racing penguins, which me, my sister & step sister played. my penguin didn't even get off the starting line!!!

Boxing Day was spent down in Bath with Joss family which was as always a nice day. We were hoping to see my step brother, sister in law & neice & nephew as well but my poor nephew wasn't well.

Oh well better go, darts to watch & James Wade has just started playing.

Merry Christmas people of blogsphere x

Lets.......play.......darts..........

Well what a week it's been full of highs and lows, or actually that should be lows and highs.

Last week started with the news that a fellow PH'er had had "The call". A doner heart and lung had been found for her. The whole PH community came together online to wait for news, we all care so much about each other, yes we have our ups and downs, but when we need each other we're always there. After the operation news filtered through that the operation hadn't gone as planned and the donor heart wouldn't pump unaided. An anxious wait was in store as we waited for news, we were kindly updated by the PH'ers family & friends. During this time many prayers and positive thoughts were sent out, amazingly a second donor heart and lung was found, and as I write all seems to be going well. We are all still praying and hoping for our PH friends continued improvement.

The whole thing rocked me as it just shows how serious and complicated transplants are. The day when we were waiting for news seemed to last a year. But it also showed the support that the PH community give each other, and I for one am proud to be part of our little group x.

 

The week ended on a definate high, Saturday we were Portsmouth bound, what some of you may not know is that I LOVE DARTS!!! Every chance we get me & Joss watch on TV. I've never been to a live match before (not counting watching Joss play once in the Witney & Eynsham league). Saturdays event was called the Untouchables and was an exhibition event which featured 8 players. One of the players featured was James Wade, now I have a soft spot for James Wade, one of the reasons for this is that last year he told the world about his struggle with depression, I know people who suffer from depression and know how hard it is to deal with & talk about. A few months ago James played a match on TV and he was obviously struggling mentally and I just wanted to give him a hug. Well on Saturday I got the chance, we'd paid for VIP tickets which included a player meet and greet. I was so star struck as the players were just wondering round the room and we had to go up to them and talk to them. I think I just about managed to tell James Wade I was a huge fan!! Joss did a much better job than I did (but then that won't be a suprise for anyone who knows us!). I became a fan of Co Stompe as he was really lovely, even took a picture of me and Joss with Michael Van Gerwin (what do mean who!!!! MVG one of the most impressive darts players at the moment, and going to give Phil Taylor a run for his money at the world championships next week, and if you're saying Phil Taylor who??? then there's just no hope for you!!). It was the best night EVER, well nearly ever, me & Mr P had a lot of fun.

Me & James Wade



The whole of the news seems to be full of the death of the nurse who took the call at Kate Middletons hospital. It's all very sad, I find it hard to understand that someone would leave behind their children & husband because of a mistake at work. It's very very sad.

I've just got back from a visit to Hammersmith hospital for my 3 monthly clinic visit. All went well apart from they were unusally behind today, my 11 o'clock appointment ended up being 12.35. I managed to do 408 metres on my 6 minute walk test (I still think all of my healthy friends should try and do a 6 minute walk test to see how far they get) my oxygen levels didn't change from when I started to when I finished which is really good. They don't want to see me for another 6 months yippeeeee.

Well blogsphere 2 weeks tomorrow will be Christmas day and i've still got loads of presents to buy, and I haven't even written a card yet....... oops. Tomorrow my little Cousin & Aunty arrive from Canada woo hoo, can't wait to see them.

well hello my friend.....

Warning Warning too much information may be given here......


Well Blogsphere I have to admit i'm not feeling too chirpy. Everything seems to be getting me down and I just couldn't figure out why...... until Saturday that is when a friend who used to visit monthly but hasn't visited for 2 and a half years turned up (and by friend I mean the thing that turns up for most girls on a monthly basis!!). I've recently had my implanon contraceptive implant changed so i'm guessing that's the cause.

This reapperance has made me feel really broody which in turn makes me sad. For those of you who don't know for some having Pulmonery Hypertension means you can't have children, this is because of the strain that would be put on the heart that pregnancy would cause, and this is the case for me. At the moment I seem to be in a low place thinking about the things I don't / can't have. I'm sure once my friend has gone I'll be back to appreciating what I do have. I had counselling after I was diagnosed and about the only thing it helped with is realising that it's ok to feel sad and angry about my situation, I don't have to put on a happy face and be strong all of the time. Having PH is quite frankly shit, it's not a bed of roses, it does affect my life in a huge way, and it's ok to acknowledge that sometimes. There was a post on the PH facebook page asking if anyone has bad days, the answer to this is yes, we all have bad days, I can guarantee everyone with PH has a day where they don't have the energy or breath so they day is spent in bed or on the sofa watching tv or sleeping. I wish I could describe what having PH is like but it's so hard.

In happier news I had a nice day Christmas shopping with my sister on Friday. Every year we have a girly shopping day me, Natalie & Mum. This year however Mum couldn't come as Granny has been flooded out of her house for a week now, her house isn't actually flooded but you can't get to it. We're hoping she'll be able to get back to her house early this week.

I also bought some new boots which were a bargain. I have small feet so I was able to buy a pair of childrens boots. not bad for going out to buy an advent calendar.

In other news the Christmas lights were switched on in town on Friday. They were switched on by the prime minister, as he is our local MP, apparently there was much booing and someone tried to climb over the barriers, not sure what to do.  I will take a picture of the chrismtas tree as it really is a sad looking thing.  Our Christmas decorations will probably go up in a couple of weeks time.

Just to end on a happy note here's a picture of my cat wearing a Christmas hat that stayed on for about 3 seconds, she was not impressed!!!

Have a good week blogsphere, next blog i'll be back to my positive self x

And now the end is near......

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

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

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

Home Alone

Well it's been a busy weekend in the Pegram House. Joss went off to Cardiff for a friends stag weekend. I have to say I was quite anxious about him going away, Joss over the last 3 years has become my security blanket, and I have to admit I felt quite vulnerable on Friday after he left and I was home alone with the cat.

That was until my lovely family turned up, Natalie came round for Pizza, and Mum & John turned up for a cup of tea. The cat decided she was going to spend the evening plonked on Aunty Natalies lap.

Saturday morning was my 4 weekly visit to Hammersmith hospital in London for the clinical trial drug i'm taking (i'm going to do a seperate blog about my thoughts on clinical trials). Mum came with me, it's usually Joss who comes with me but as he was in Cardiff Mum came. Rather suprisingly we had a lovely day, we did lots of chatting, and Mum got to ask the lovely Dr Skinny Jeans loads of questions that me and Joss never seem to think about asking (she described Dr Skinny jeans as easy on the eye!).

We then decided that we'd stop off at John Lewis on the way home. I didn't buy much but my main weakness is nail varnishes. I bought 2 new sets of Andrea Fulerton colour layering systems one blue & one purple, I could have bought loads as they had some really nice colours. The christmas decs in John Lewis weren't that good this year so didn't buy any.

Spent some time over the weekend on my other weakness...... watching films. Watched The Young Victoria on Friday, I love that film not least as a lot of it was filmed at Blenheim palace which is just down the road and to which I usually have an annual pass to. Friday evening I watched Made of Honour which was a typical easy watching RomCom (Natalie said I couldn't watch Stardust.... I had only watched it a week ago).

Saturday nights film was The Adjustment Bureau, which I thought was really good, and made me think..... what if our lives are planned out and we don't have a choice what happens..... well I for one would say with all the rubbishness in my life with my health, whoever is making the choices isn't doing such a bad job. You may be suprised by this but I'd rather have this disease, my family and my husband, rather than have perfect health and nothing else.

Best sign off now it's time for Stictly results :-)

first ever blog

Well This is my first adventure into the land of blogging.... hopefully it will go well. I'm not really sure what i'm doing so far.

I'm going to use this blog to keep a record of my life. So first things first who am I, well my name is Lynsey, I'm 35, I live with my husband and my cat Casey (she's a princess). I have a disease called Pulmonary Hypertension which I try to not let define me. I work for a social housing charity.

I guess the main reason I have started this blog is that i'm just about to venture down the transplant route. Well I say venture I think i'm more dipping my toe in at the moment. Basically my consultant thinks i'd benefit from a third treatment for my PH, but I can only get funding for 2 treatments, the only way to get a 3rd treatment is to go down the transplant route. Also they don't want to rush me down the transplant route they don't want me to make a decision at a time where a transplant is really really needed. What is likely to happen (fingers crossed) is that I go for transplant assessment and they'll tell me i'm too well. This will then be reviewed periodically until I get to a point where i'm not too well (fingers crossed again that this will be a while away.

Anyway think that's enough waffling for my first blog. I'm going to try and keep this blog going but i'm not known as a starter finisher...........

Bye for now blogland xx