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