January Bits and Pieces!

This has been a busy week with all sorts of bits and pieces going on, wedding planning being one of the main activities amongst them!

Firstly, it was back to reality and a visit to the GP to finalise which drugs my surgery will prescribe and which they won't and to also update the doctor on my changes in medication. My surgery is only able to prescribe the 'cheap' drugs and not the more expensive ones. These will come from Papworth. It is all a bit of a rigmorole, as at the end of the day it will be the same Primary Care Trust that will pay for them anyway. 

It seems to be a big lottery over drugs and who will pay for them: I've met other transplant patients whose doctors are willing to prescribe all the drugs and then others like me, who have been refused the expensive ones. According to the newspapers it seems to be a similar situation when it comes to cancer drugs and there are even reports of drugs being refused because they are seen as too expensive, although they have been approved by Nice. At least I am going to get my drugs one way or another, so I can't complain, but it seems wrong to me that there isn't just one straight forward system for all. 

We celebrated an early 'Burn's night' on Tuesday evening with haggis, tatties and neeps - we always celebrate 'Burn's night' - Rob was born in England, but his late parents were Scottish, so we like to carry on traditions! It's a quick and tasty meal, proper winter comfort food! And all washed down with a wee dram of whisky if you fancy one! 

We were recently interviewed for an article that is going to be featured in Hertfordshire Life, the article is going to be about living in Knebworth, but they had seen our transplant story in the local news and wanted to include it too, together with our views on living in Knebworth. We are always happy to try and spread the word about organ donation, so on Wednesday a photographer visited to get some pictures to go with the article. We are beginning to get used to this!  The feature will be in the March issue, which will be on sale in February. 

We have been exploring a few wedding venues this week too, for Sarah and Oli's wedding, just shopping around really to see what there is available and when and getting an idea of costs. This is all very exciting for me, and even more special in the light of my transplant. They hope to get married in spring next year and now I've had my transplant, I'm looking forward to enjoying every minute of it -  planning, preparations and all! It's a good excuse to get out and about and have a few afternoon teas - as Oli said on Saturday, after seeing a venue that didn't quite meet our needs, 'Well at least we've had a good afternoon together and enjoyed a nice afternoon tea!' It's going to be a lot of fun: I'm going to make sure of that! 

Just when we had thought we had finished with media interviews for the time being, on Friday I was asked to do another interview with the British Heart Foundation for their magazine. I was more than pleased to help with this, as it was about living with Idiopathic Pulmonary Arterial Hypertension and the importance of Professor Morrell's work and research on genetics, which aims to help develop new treatments for Pulmonary Hypertension. Hopefully the article will help raise awareness of Pulmonary Hypertension. His team were awarded a two million grant last year for this important research, which we are all hoping will lead to some targeted new therapies for PH and even a cure. 

We are still catching up with friends we haven't seen since my transplant and spent a lovely day on Saturday when friends came from Lichfield, near Birmingham to visit us. It all felt a bit surreal at times, as last time we met up was just before my transplant and now I've recovered a lot from the operation it was a bit like I had just blinked and it had never really happened! At other times I noticed how much more energy I had and how I can concentrate on conversation for longer. We are slowly managing to meet up again with many of our friends since I had my transplant and seem to have a busy calendar over the next month or so. 

After a lovely weekend, just as things feel like they are getting back to some normality after my transplant and Christmas, it's time to start packing a case ready for my next hospital visit - transplant clinic and yet another brochoscopy are looming again. Hospital always brings it home to me, the seriousness of all that has happened and reminds me that there is always some uncertainty about the future. I always begin to get worried about what they might find and why they need to keep checking my lungs over and over again. On the other hand it is always a relief to be going back as there is always something niggling - this time my never-ending cough feels worse this last few days - so it will be reassuring to be checked. It's always a massive relief to get home again and be reassured that all is going well. So I'm bracing myself ready and hoping I'll be home again fairly quickly again. 

My late father once gave me a lovely silver cross and disc engraved with a prayer called, 'The Soldier's Doxology', which had belonged to my grandfather. My grandfather wore this during the Battle of the Somme and survived it. I always keep it with my transplant bag and bring it to the hospital every time I stay in or visit. It is my lucky charm, I reckon if it worked for my grandad, then it could work for me! So far, so good, it will be coming with me yet again! 

Today I'm also sending off my first writing assignment for the writing course I've just enrolled on. I've decided it's time for some new challenges and activities now I'm getting my life back again and writing is something I can do from home and can also manage even if I feel a bit under the weather so it is a perfect choice for me. It feels good to get started on a new challenge and I am mainly doing it just for my own pleasure, but who knows where it may lead ... we will see! 

So a busy week with lots of bits and pieces going on - life seems to be getting busier and busier now, which is good news, because busier and busier means getting better and better! 

My Week in a Box

A jumble of boxes!

This week I decided it was time to get some more organised systems for all the tablets I need and get a proper grip on all the medication, as I am feeling a little overwhelmed with it all - partly because there is so much of it and each one seems to keep running out at different times, so keeping tabs on it all feels like a precision military operation at the moment! Sounds a bit pathetic after all those intravenous drugs I used to take, but it feels like I'm starting all over again and it's time to start trying to get a grip on it all and get some control over it.

To start off I wanted to get some tablet boxes, so I can stop fumbling around with loads of packets early in the morning when I need to take most of them and get myself organised for the day. Of course when checking out various tablet boxes in a few chemists none of them were quite suitable for separating out the various quantities that need to be taken at different steps of the day, but we managed to find some where you could break up the weekly strips they come in and put them back together again in a daily strip, perfect, so we ended up buying four sets so I could split up my tablets in the order of my day. I also bought another separate weekly strip just for the 6am tablet round that I can just leave upstairs by my bed. 

Bedside treats!

This feels much more organised now, easier to remember what to take and when and easier to pop in my bag if I'm going out and about or away from home or in hospital. It's a lot more practical in an emergency too. No more packets of tablets being carted around or scrabbling about with first thing in the morning, just a sort out of tablets once a week, which doesn't take long. 

The next thing to sort out was the monthly prescription with my GP, as it is coming up to 3 months since my transplant and Papworth only prescribe all the drugs for this period. My GP has already agreed to prescribe some and then refused to prescibe others, obviously the ones he has refused are the more expensive ones, as he says they will blow his prescription budget for the year! Luckily for us and with some great relief, if this happens, then Papworth organise the prescriptions for those the GP refuses. As usual it seems to be the great nationwide post code lottery as to whether your GP will do the drugs for you or if your Primary Care Trust will pay for them or not! It is a bit ridiculous there is not just one system of obtaining the drugs you need for survival throughout the country. 

We tried to make another appointment at the doctor's to sort everything out properly once and for all, but had to try and do it with the doctor's receptionist in the end, as there are no appointments left at the doctor's now until after Christmas unless it's an emergency! Another issue that is in the fore in the news this week, doctors and A & Es on overload! Two days notice needs to be given at my doctor's for prescriptions, which is fair enough, but two days later and there was still no prescription signed off for me. Come back tomorrow I was told. Good that I was trying to organise this with some time to spare and time to still get an emergency appointment if needed. Another visit the following day and it was eventually all sorted, thank goodness, organised at last! 

My week in a box!

Hopefully things will settle down now and I'm hoping I can just get back to how I used to manage my old drugs - on a repeat monthly prescription and never getting too close to ever running out! On a good note, the pharmacy has been really efficient, they know me well already and asked me for details of all my new drugs, so they can be prepared for when I bring in my prescriptions, so that is really encouraging! 

I don't usually look back in the past, but I can't help think of those more carefree days, before I was ill, when I used to think it was an inconvenience to have to make the time to pop to the chemists for a bit of lemsip and cough stuff when one of us just had a trivial cough or cold! I never appreciated how easy it was - both to sort the medication out and just run the course of a cough or cold - and I'd even be guilty of a good moan - how I could 'eat my words' now I have had that real first hand experience (and for the second time around now) of what many people with serious illnesses or conditions have to cope with! 

And the tree is up!

A bit more patience and peserverence and I know will be back to my usual organised self by the New Year! It is definitely going to start in a more organised fashion if I have anything to do with it! 

It is getting nearer to Christmas, we have decorated the house inside now and put up the tree, well a few trees, and we are getting in the Christmas spirit. Last of the cards have been posted and last of the presents bought and wrapped. I have also hit another target today and been for a walk of about a mile this time, so am feeling very proud that I've made a big step towards my longer term goal of going for a proper long walk. I've been back on my exercise bike each day this week too and am on a mission to try and get fitter, so a positive week all in all.

I am also thinking about my donor a lot at this time too and how I have already had my Christmas present, the most precious gift and greatest gift ever - the gift of a new life and new opportunities. If you want to do one good thing this Christmas and haven't already, please sign up to the organ donor register, the link is posted below. 

This decoration, from Papworth Hospital Charity, is in honour of my donor, who I am thinking of at this Christmas time