I'm back!

Well hello blogsphere,

So one of my new year resolutions was to restart my blog, but I thought starting in January was so clichéd why not start the new year in Feb!!

I now have more time to do my blog as one of my other New Year resolutions that I did actually achieve was to reduce my days at work. So now i'm down to 4 days a week, and no longer have that dreaded Sunday night/Monday morning feeling!! I seem to be achieving quite a lot on my Mondays so far. I've resisted the urge to spend Monday mornings in bed by booking my INR blood tests on Monday mornings. The cat seems to be enjoying having me home for an extra day. And i'm sure (and I know this is going to sound odd) that Mr P now enjoys having the house to himself on Friday afternoons. That's the thing about me & Mr P although we enjoy spending time together we also enjoy our alone time.

Well all this rain has been a bit of strain on the family. My Granny was evacuated from her house back just after Christmas, and the rain just keeps on coming. So Granny is still not home, and in all reality she probably won't go home now. But at least that means that she will move somewhere closer where we can all just pop in and see her.   This now leaves the task of sorting through Granny's house and moving her stuff into storage at Mum & Johns house.

So January seemed to fly by in a whirl. I spent a few days in Bournemouth watching the UK Dance Championships. I'm sure I've said on my blog before that my whole family is into Ballroom & latin dancing, it's in the genes. I just love sparkles..... and sparkles there were. They had a whole hall of ballroom dresses for sale, the whole place was full of sparkle. Slightly out of my price range though as they were about £2,000 each!! (makes my wedding dress seem cheap now Mr P).

So there are 2 things in the news this week that I thought i'd mention. Firstly is the untimely death of Philip Seymour Hoffman. Such sad news, he was one of my favourite actors and seems to pop up in many films I love. From the seriousness of Doubt & Capote to the more light hearted Rock the boat & my favourite film Almost Famous. It would seem that he has died of a drug overdose, which again saddens me.

The other news I first started hearing rumbles of last week on the Jeremy Vine show and is to do with the use of smokers lungs in transplants. Now I can guarantee that when I was well and a transplant wasn't in my future I would have said I never want a smokers lungs. Yes my smoker friends your lungs are being damaged with every puff you take, and no doubt you'll end up with emphysema in your future no matter how long you've stop for. However now with transplant potentially looming somewhere on my horizon it does become a simple choice between living with smokers lungs or not living without them. It is said that 50% of lung transplants use smokers lungs. Now if you think that even with using smokers lungs there are not enough organs to go round, imagine what it would be like if they didn't use them. The other thing is the lungs from donors are checked so closely and if they think for one minute the lungs aren't good enough to use they don't use them. I think the thing that surprises me is that there are 250 people on the transplant list waiting for lungs. That's really not a lot is it, and there's not enough donors to go round. I've been told if I go on the transplant list my wait will be a long one, probably about 2 years.

Anyway that's more than enough waffle from me. I'll leave you with a couple of sparkly pictures from Bournemouth.

And if you're the person who I used to work with who happened to mention to a colleague that you were still keeping in touch with my blog..... well thanks for inspiring me to get going with it again, and I hope things improve for you in the future :-)                

 

Pride - in the name of love

Well Blogsphere it's been a while........... sorry.

The last few months have been a whirlwind and I really don't know where the time has gone.

I've done a few things i'm particularly proud of over the last few months. Firstly me & Mr P went off on our Iceland & Norway adventure. We had such a good time. The Scenery is beautiful in both countries. We managed to do loads of trips all over the place. I was brave enough to go in a Thermal pool in Iceland, which was amazing (if a bit smelly). I also managed to swim a couple of times in the adult only pool onboard ship. It's always a worry in public pools that my infusion site will get infected, but as it was an adult pool I wasn't so worried. I even managed to swim 4 lengths!! seems amazing now that me and Mum used to swim every week and we used to do 30ish lengths of a full size pool. This was only a small pool but it still felt like an achievement.



 

 

The other thing i'm  proud of from our trip is crossing the Artic Circle!!! I even got a certificate and it's one to cross off the list.

 

The other thing I'm proud of achieving involves a story. Now I come from a long line of ballroom dancers. My Grandparents danced and won medals. My Mum met my Step Dad dancing, & my sister takes dance lessons and is a beautiful dancer. I learnt to waltz by standing on my Grandads feet while he waltzed around the room. Me & Natalie would dress up in my Granny's dance skirts and we'd dance and dance and dance. Well I think Natalie got the whole dance gene and has taken up dancing for a few years now. And last month we joined her at a ball where she received medals for both Ballroom & Latin dancing. She is such a lovely dancer I was so proud watching her receive her medals and then dancing a rhumba with her dance teacher.

 

Then it was my turn to make myself proud (and it seems my family). The last waltz was announced and I decided that this was it, this was my chance of the evening I was going to ask my Step Dad to dance. My memories of those dances with Grandad came back to me (and maybe some of the dance lessons I had as a child) and off we went around the floor. It was hard work, and my lungs thought they were going to explode (don't even ask about the heart!! but lets just say glad I wasn't attached to heart rate monitor!!)  but I loved every single minute of it.

 

So for your enjoyment here is the video footage my Mum took (it's not the best, I'm wearing a pink & black long dress, you'll realise who I am by the end). Unlike Natalie I'm not up to Strictly standard but not too shabby after not dancing for goodness knows how many years and especially with a heart & lung condition!!! ENJOY!

 

      

  

sunshine

Hi Blogsphere,

Sorry I seem to have abandoned you for nearly a month again. Don't know where the time goes....

Not much has been happening in that month, well i'm sure it has but I really can't remember anything exciting.

This sunny weather has been doing me the world of good, it's seems to be just right for my lungs. Not damp & not too hot and humid seems to suit. Me and the cat have been enjoying the sunshine. The problem with having a cat with white ears is that she needs to have suntan lotion on them which is a real battle. You have to get her in a headlock and put the lotion on.

My other pets have not been doing so well. I have an aquarium and I came home the other day to find 7 dead fish in my tank..... not a pretty sight. Think we must have had some sort of pollutant in there.

Life seems to be chugging along. Mainly working and enjoying the sunshine with a book. I'm still really proud of myself that I manage to continue to work full time. I won an award at work for being a good manager through caring and conversation...... think my team must have been having a good day when they filled in the survey!! To be honest they are a great group of people so fairly easy to manage.

I seem to have been out a lot recently, cocktail nights, dinners out etc. It's been fun.

I'm coming up to being another year older soon..... sigh, I had to really think this morning how old i'm going to be this year. 36!!! wow how did that happen?? Having a BBQ with friends so should be a good one. I think i'm going to start making a list of things I want to achieve this year.

One of the things that will be achieved is a trip to Iceland & Norway. Not long now until we go. I've been practising with my camera and hopefully I'll come back and be able to fill my blog with pictures of beauty. We've booked all of our trips, got all the medical letters I need, and are just working out what clothes to take. I really can't wait!!

It's been a real weight off of my mind having made my decision about transplant. I had a letter from the transplant consultant yesterday with the report from my last appointment. As I expected nothing has changed on my echo since my last echo, so all good.

One of my friends went for an initial visit at the transplant clinic yesterday, unfortunately her heart & body isn't well enough to cope with a transplant. It's just brought back to my mind how narrow the window of opportunity is.

Better sign off now blogsphere, Mr P is back from golf. Stay well & enjoy the sunshine. Will post soon x

Happy Dayz

I don't want to go, I don't want to go, I don't want to go, I don't want to go. Don't make me go, don't make me go, don't make me go.......... those were the thoughts going through my head yesterday. Along with that feeling in your stomach that feels really heavy, and flip flops around.

Yesterday was a Harefield hospital day, I had an appointment at the Transplant clinic & I was not looking forward to it. So with trepidation we set off. The journey wasn't too bad until I read my appointment letter and realised I'd got the time wrong, instead of the 10.45 I thought it was it was 10.15!!! we were never going to make it on time. But not to worry I phoned the transplant clinic and told them I was going to be late which wasn't a problem.

After arriving at the hospital it's off to have blood tests, ten tubes, and see the transplant co-ordinator to give me the slips for all of my tests. First Echo, then lung function, followed by chest x-ray then finally ECG. All went smoothly. Then off to the friends of Harefield hospital Café for lunch.

Then the wait to see the doctor, the appointment system is basically your appointment could be anytime between 2pm & 5pm but they like you to be in the waiting room from 1.30 onwards. Everyone is given the same time and you just sit and wait, and wait , and wait until you are called. At about 3.30 the transplant co-ordinator came out and said I needed a liver scan as one of my blood tests came back a bit funny. So off I went for a liver scan. All was fine with that and what they were concerned about was my bilirubin levels had been high, if they had of looked at my notes they would have seen that I have Gilberts syndrome that just means I have higher than normal levels of bilirubin.

Then back to transplant clinic to wait again to see the doctor. I have to admit that I was really anxious about seeing the transplant consultant. In the past I've found the transplant consultant overly eager to give me a transplant. We were finally called to see her and she asked me what my thoughts on transplant were.

Now this decision has taken me a while to come to terms with. But the decision I've made is that i'm not mentally ready for transplant, I don't know when, or even if I ever will be ready. Also even though I have severe Pulmonary Hypertension compared to others I really don't have many symptoms. So I'd be swopping mild symptoms that I can live with for problems which are unknown. I fully understand the consequences of not going on the list now, at any point I could become too ill for transplant. After I explained this to the consultant she was completely on my side. They are going to monitor me every six months and at any point I can change my mind and go on the list.

I feel like a huge weight has been lifted off my shoulders, I know i'm only delaying the decision, but I know i'll know when i'm mentally ready to go on the list, and I just can't go on the list until that point (which the consultant agreed with). So for now i'm not going on the list & i'm going to plod on for a while longer.

I've probably completely bored you by now so i'll sign off for now.

Take care Blogsphere x  

Routine

Hi Blogsphere,

What's the first thing you do when you get up? I have the same routine every morning virtually. Get up, feed the cat, make a cup of tea, sit for a bit and take medication, have a shower, sit for a bit, get dressed, sit for another bit (it takes me a while to get going in the morning). So far a routine that will be familiar to most, maybe without the medication taking though.

The next thing I do is check my Facebook account. Now this for most will seem a bit obsessive. Don't worry I've not completely become addicted to Facebook. What I check for is to see if any of my PH friends on the transplant list have had there call over night.

This morning on checking my Facebook accounts I found that my fellow PH friend Anne had had the call at 2am this morning. The latest news is that surgery went smoothly which is really really good news. The whole of the PH community come together in times of trouble & transplant. It is on many of my PH friends thoughts that the next call could be them, and I salute them for being so brave.

That's all for now will do a full blog over the weekend. Got a night of cocktails with the girls ahead of me :-)

Take care xx

Back again

Hola Blogsphere!!

Well I've been missing for a while now, I've written several blogs in my missing time I just haven't posted them.

After going for assessment and finding out I do need a double lung transplant the world kind of fell apart. It really did feel that i'd sunk a long way and couldn't find my way up. I am now on some tablets o make me happy and they seem to be doing me the world of good, even if it's a placebo affect as I don't actually think I've been on them long enough for them to work. I would also put some of my change in mind set down to a rather fun night out with friends last Friday which started with a free bottle of bubbly!! And also my rather special husband just being his very special self which keeps me sane.

It's such a tough decision to make, a transplant is in no way a cure but rather a change from one set of problems to a different set of issues. And I can' get my head round the waiting for that phone call. They've told me because of my small frame, common blood type, and the fact I have antibodies that it could be a 2 year wait. There is just so much I want to do that I just couldn't if I was on the transplant list. At my work I get a 3 month paid sabbatical next year and the thought that it could be spent waiting for  a transplant call doesn't really fill me with joy. I'd always envisaged my sabbatical being filled with holiday adventures. But then I think of my friends who are already on the transplant list and they seem to have rather full lives. It's just such a huge decision to make and one i'm not going to hurry in to.

It was a bit of a sad week really as I went to see my GP for the last time. He has been quite a support where PH is concerned as he had previously had a brother & sister who had it as patients in London. He was the first doctor I saw who realised I had a heart murmur and that there was something wrong. It's very common with PH that it goes mis-diagnosed for years. I was lucky that he was the second doctor I saw with my symptoms. But he is now leaving my GP surgery. So now I get to teach a new doctor about PH. The new doctor is a female, I've not had good experiences with female GPs in the past but hopefully she will be eager to learn, and will appreciate having a patient who's not run of the mill.

We've been out sofa bed shopping today, oh the excitement of being an adult!! I've finally accepted that my spare room is ever going to be a nursery or a childs bedroom. So onwards and upwards it's going to be a nice spare room with a sofa, new computer desk, and just generally not the dumping ground that it is now.

Our bathroom will officially be finished in the next couple of weeks when we have the new carpet put in. It's only taken 11 months which in the Pegram house is quick! Mr P is very good at a spot of DIY but we do seem to start new projects before we've finished old ones. But that's just the way we are. Mr P should be very proud of his bathroom it looks fantastic. I'll post pictures when it's finished.

I'm hoping I get to see my Mum & Step dad tomorrow, I haven't seen them in 3 weeks as they have been on holiday and then when they got back they have both been ill with cold/flu type bugs. I just can't risk catching anything off of them. I've already been off  work at least one day per month for the last 4 months. I really don't like letting the people at work down. And they are starting to get a bit twitchy about whether i'm overdoing things at work. But I've just been really unlucky with the amount of bugs that I've caught.

Best go blogsphere before I completely bore you, and I have a roast chicken in the oven that needs basting.......

Have a good week xxx

How lucky I am

Hi Blogsphere,

Sorry for abandoning you for so long, it's been a whirlwind of a few weeks.

So this blog is dedicated to My lovely Mum as it's Mothers day tomorrow. My Mum is a very special person, I really couldn't ask for a better Mum, she's not only my Mum but my friend. I know she'll support me in everything I do and every decision I make. She, as always, has been such a support over the last few weeks. We've not had it easy over the past 18 years or so, our little family seems to go from one challenge to another. But that has made us a strong family. Mum's kept us all in one piece, I really don't know how she does it sometimes, it's often just a look or a much needed hug but she manages to fix so many things just by being Mum - so happy Mothers Day Mum  x Love you.

This week has been quite a challenge, i've found myself struggling to pick myself up this week. I'm really trying but it's been quite a challenge, i've just found that my moods been really low. I've also been exhausted. If you ever get the chance google (other internet search tools are avaliable!!) The spoon theory. It really does explain what it's like having a disease like PH. The basics are that you start each day with a certain amount of spoons, you use a number of spoons to be able to do tasks throughout the day. It shows the need to use your given spoons wisely each day. Well this week I have not used my spoons as wisely as I probably should have, but I had fun. Usually I store my spoons for work cause even though I just sit at my desk I need energy (or spoons) to concentrate and use my brain. This week however I've been out every night after work so my energy levels have slowly been depleting all week. I ended up on Friday completley exhausted. So today has been mainly spent sitting recharging my batteries.

This morning was spent watching Eternal Sunshine of a spotless mind which I haven't watched in years.

This week has been a holiday based week too. We had to pay for our cruise to Iceland & Norway (gulp). I also booked to go away with friends to Longleat center parcs. Both holidays have had there challenges in terms of my PH. We can now book the shore excursions for our cruise. Now the problem i'm having is that most of the trips go up mountains, and if the trip doesn't go up a mountain then you have to go up a mountain to get to somewhere on the other side. Now with PH high altitudes aren't particularly good as the concentration of o2 drops, making breathing difficult, and possibly causing all sorts of trouble to my insides. So i've had to check with my PH centre how high I can go before booking any trips. The center parcs holiday has also brought troubles as center parcs is a big place and you can't use cars to get around. So I have found myself giving in and i'm going to hire a mobility scooter........ but it will be good, and I won't have to worry about holding up my friends, and they won't have to worry about me walking too much. And at the end of the day it will give me more energy to drink more Strawberry vodka!!

We have a new addition to our house..... an exercise bike!! we've decided that we both need a bit more exercise (well any really). So next week once my energy levels are back up it's all change. I'm going to do some exercising, i've got a DVD with exercises aimed at people with PH. I'm hoping this will give me a bit more energy, and should give me a bit more positivity.

We've also decided to make one of the things we did this week a regular event. On Wednesday we went off to Fat lils, a local bar / gig venue, for their acustic night. We went this week as one of Joss' friends was playing. But I have to say the level of talent was incredible. So we'll hopefully be going to the once a month event from now on. I forgot how much we both love listening to live music. We haven't done it in such a long time.

Well best go blogsphere before I bore you too much. May post again soon as i'm sure I had loads of thoughtful things to say last night, but I can't remember what they are now...... and if I end now maybe no-one will notice I haven't mentioned the elephant in the room beginning with T (I promise I will mention it soon, just not yet).

Have a good week. And happy Mothers day to all my Mummy friends, whether you're Mum to human children, or animal children you're all special. xxx

From the Heart

So this week is From the Heart week on itv. The timing is perfect as i'm off to Harefield next week for transplant assessment. I thought i'd want to be avoiding all the publicity and sticking my head in the sand to try and forget about next week. But it's actually done the opposite watching Kath & Stacie on TV, and watching the tonight special has given me the courage to face next week.

The fact is I will need a transplant at some point to save my life, and ok that might not be for a while yet but it is something I have to face up to if i'm going to come up with the right decision for me.

So the organ donor register is an odd thing, people don't want to think about it, dying is a pretty big thing to think about. I don't want anyone to die so that I can live. But people do die that's the only certain thing in life. I know what it's like to lose someone close, my Dad died when I was 18 and it is an unbearable thing. But if I knew for one minute that he had helped someone else live then what a great thing that would be. Unfortunatly he was riddled with cancer and died at home so donation wasn't an option.

What if I was your daughter, sister, cousin, Mum would you want to save my life? by being an organ donor you could save someone like me.

So what's it like knowing you are likely to need a transplant, to be honest it's hard to tell you. The reason for this is that i've buried my head in the sand, it's just such a big thing to think about. It's almost too big, the thought of waiting for the phone to ring, the thought of the consequences of having a transplant, the thought of the consequences of not having a transplant, they are all too big for my brain. I really don't know how people make the decision to go on the list without going mad. Where do you get your hope from when there are so few donors?

People often say that i'm brave going through what I am, dealing with what I have to deal with, facing up to my situation. But the truth is i'm not brave I just plod along, it's the only thing you can do, anyone in my situation, and many of you readers are, would do exactly the same. You get through each day the best you can, with a smile on your face because you know tomorrow might be a bad day so you make the most of today. If you're having a bad day you smile because maybe tomorrow will be a good day.

Do you know it's 20 years since I left school this year. A reunion is being planned, do I think i'll go, i'm really not sure. My school days weren't the best, it was the couple of years after in college that I hold dear, not that I learnt much in those 2 years but I made some good friends. The thought of meeting up with people I haven't seen for 20 years and answering the inevitable questions, children, work, health etc just isn't filling me with excitment. No I can't have children, no my health is crap, no I haven't climbed the career ladder. I wasn't in the popular group at school, i'm probably the girl in the school photo who no-one apart from friends know who I am!!

I really should write this blog just before I go to sleep as I often think of inspired things to put in it then....... but when I come to write I forget what I want to say.

Tomorrow is valentines day, something me & Mr P have never really bothered with. This year though we are hoping to go to the Cinema to see Moulin Rouge, one of my favs.

Well best go blogsphere, I have Homeland to catch up on. Next blog will probably be a panicked one on Sunday xx stay safe.

painful.........

Hi Blogsphere,

Well what a week it's been full of snow. I really don't cope well with snow, it makes breathing really hard when I'm outside and I spent the week when I was outside shuffling along like a little old lady.

It was really pretty though, I just wish i'd been able to get out and about with my camera.

It's rather quiet in the Pegram household today, Mr P is suffering after a night out with the boys...... 3am he staggered in this morning.

As the title of todays blog suggests today is a painful day, and i'm feeling a little fragileafter taking coedine to get rid of the pain. For those of you who don't the cause of my pain is this:

 

 



This is my pump which is attached to me 24/7. the round plastic bit attaches to a clip on my skin on my stomach. Getting used to this little machine takes a while as you would imagine. I usually carry the pump in my pocket as the tubing is long enough. But if I want to wear a dress or skirt then I wear my Joey pouch. Joey pouch was the invention of a fellow PH sufferer, it's a pouch that attaches to an elastic wasteband. It is an invention that has made wearing the pump so much better. Living with my pump day to day has made life interesting. You get in to a rountine of where you put it when you're in the shower, where to put it in the bed when asleep. I often wake up with the pump twisted around me where i've tossed and turned in the night. I've had a fair few incidents of dropping the pump, or pulling the line out of my stomach (yes it is an ouch moment!!!). I often wonder if people really appreciate what it's like having a machine attached to you all the time. It's like having an extra limb which doesn't move on it's own. Some days it always seems to be in the way.

Anyway about once a month I have to change where the site goes into my stomach. This causes a great deal of pain for a couple of days. It sort of feels like someones stabbed you (not that i've ever been stabbed) and the knifes still in moving about, and then to add to the joy someone is pooring acid into the knife wound.......... yes it is that bad. Most of the time I out on a brave face and try and deal with it, but sometimes it breaks me, and I just end up feeling sorry for myself. I'm a lucky one though as my pain only lasts a few days, some people who've had this type of pump and medication get constant pain. Due to licensing issues they no longer offer this medication to new PH patients, and now everyone who needs constant medication have to have a hickman line, which is a line which goes straight into the heart, and the medication needs to be mixed every 12 hours. My medication only needs replacing every 48 hours.

At a later date i'll do a post of how the pump works when I have to put new medication in.

You are all probably thinking I must hate my pump, but I don't, it's like any relationship we have our ups and downs, but at the end of the day I love it........ and the reason for this is without it quite simply I wouldn't be alive.

Have a good week blogsphere, thank you for reading xxxx

And to my lovely husband, Sister, parents & friends, you're love and support gets me through the painful days xxx

24601

I can't believe it's been 2 weeks since i've written my blog..... sorry blogsphere. But to be honest not much has happened. New Year came and went and now we're back to work work work, and what seems to be recovering from working. My cold seems to be hanging on in there, and i've been very generous in sharing it around with Mum & Joss now having it.

I did make some New Years resloutions, need to lose a bit of weight, and want to increase the amount of exercise I do. It's hard with PH because my exercise ability is severly impaired. But I think a bit of Wii fit in the winter & a few light walks in the summer should help my health. My other New Years resolution is to do loads of fun things this year. Not sure what but thinking more theatre / films & music.

Granny is still unable to go home due to flood waters, but they are going down.

This times blog is going to be a bit of a film review I feel. I have watched quite a few films over the last couple of weeks as it's the one thing this disease has given me, guilt free film watching time!

Films recently watched have included Tinker, Tailer, soilder, spy which I think I lost somewhere but Joss enjoyed it. Horrible bosses which I enjoyed and was quite a good black comedy, and has Kevin Spacey & Colin Farrel in it so how could it go wrong. Moneyball was good too, Brad Pitt gave a good performance I was quite suprised how much I enjoyed it as it's quite sports oriantated.

The suprise film that I enjoyed this week was Rise of the planet of the apes, I thought it was going to be all fighting apes and action, but it was suprisingly good and it was easy to see where the Ape revolution that leads to the Planet of the Apes came from.

Now did someone mention revolution??? I've just  got back from seeing the best film i've seen in a long time, Les Miserable. It was incredible and had both Mum & Natalie in tears (oh ok maybe I shed a few little tears!!). It was such a powerful film and totally did justice to the theatre version which I saw 18 months ago (and was slightly spoilt in seeing Alfie Boe play Jean Valjean). Ok the singing isn't the same as the powerful singing you get in the theatre but Hugh Jackman was great. I felt all the female singers were compltley blown out of the water as soon as Samantha Barks as Eponine started singing, Eponine is my favourite character in the show. Not sure the character of Thenardier was quite right, but then when we saw it in the west end Matt Lucas played the part to perfection. It was really good to see Colm Wilkinson in the film too, boy can that man sing. For those of you who don't know Les Mis history Colm played Jean Valjean in the original West End production. I'm so glad Cameron Makintosh produced the film, just don't think it would have done any justice to Les Mis without him. I can't recomend going to see Les Mis enough. Although I do think eveyone should also see the West End version.

It did make me think though what do we do when we're unhappy? we moan. Maybe we should be we need to take a leaf out of the books of the french revolutionaries and do more. So in that vein I feel the first revolution should be a move towards an opt-out system for organ donation. I believe everyone should have the right to chose not to be a donor if they feel strongly about. However I feel many people aren't on the organ donor register just because they never get round to it. It's also important you tell your loved ones what your wishes are. And before anyone asks yes I am on the organ donor register and was before I was diagnosed with PH, although not sure which parts of me would be any good. http://epetitions.direct.gov.uk/petitions/38220   is the link to the e-petition if you want to add your name to the list.

I've got Evita to watch this week sometime. I promised a friend i'd watch it so I really must get round to watching it. Not sure why I can't seem to get motivated to watch it as I like a good musical.

Well must go Blogsphere, I have another darts final to watch, it's the BDO final between Tony O'Shea & Scottie 2 hottie waites. Although BDO just isn't PDC........ oh no i've become a darts snob..... xxx

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