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