Not Good News for Organ Donation...

Time is moving on and I'm nearing the 22 months post transplant mark now. It is strange because even after all this time you find yourself doing more firsts or realising that you are doing something with much more ease and confidence than you thought you ever would.

It started at my daughter's wedding and I realised I'd been up from 5.30am and didn't stop properly until past midnight. I realised I'd been on my feet most of the day without even thinking! Just getting up at 5.30am would have finished me off pre transplant! Then I'd looked forward to the evening do - there was a live band and plenty of dancing. Dancing - well that was another huge first - dancing all night and joining in properly with everyone. Most people were a bit tipsy and we were all doing lots of crazy dancing, but I was just drunk on being able to dance again and being able to take part in all the madness and fun!

We spent some time just afterwards in the Lake District. Last year I took my kayak out on the lake for the first time at 9 months post transplant, just for a little go and to see if I could. This year I spent two days just paddling up and down in it. I only do it for pleasure and relaxation - I'm no sporting, racing or long distance kayaker -  just a leisurely one, but it was wonderful to be fit enough again and spend time being able to do without a worry or thought.

Then as a last minute thing we decided to go to Italy and off we went without much thought - obviously just the medication to organise - but other than that, off we just went. I couldn't fly or go abroad pre transplant, so travelling abroad always feels special, a complete privilege. If I even went shopping prior to my transplant it was a major planning expedition - timing around drugs and their restrictions, planning for the wheelchair... all that's changed so much now.

My best moments every day on this holiday were when I was swimming - swimming in a pool once more - another first - how fantastic did that feel? Blooming marvellous is all I can say - floating in the water with the sunshine on my face (and the factor 50) was a pretty wonderful feeling. I didn't think I would ever swim again.

It doesn't ever go away what a miracle that all this has been and what a wonderful gift I've received. While we were away I was contacted by NHSBT and BBC to do some interviews, but I was unable to help because we were abroad. I was a bit disappointed I couldn't help. They wanted to interview me because unfortunately the latest news about organ donation isn't so good. The figures for the amount of transplants taking place are down on last year's and it points to the shortage of donors getting worse.

NHSBT News Release

Numbers are down for the first time in 11 years. Partly because of families refusing to donate - family consent rates remain stubbornly below 60%. Partly because there are fewer people dying in circumstances where it is possible to donate. Obviously with fewer donors, the importance of gaining family consent is such a high priority. It is so important to discuss your wishes on organ donation. 90% of families give consent if they know it's what their loved one wanted. 

There are over 7000 people waiting for transplants - real people - some of them are friends. I've also got dear friends who have lost loved ones because they have had to wait so long and became too ill while they waited. It is absolutely heartbreaking. 

So feeling a bit disappointed this time that I hadn't really been able to help, a friend suddenly tweeted that it was great to see us on the NHSBT Facebook page - we had a look and there we were - a picture of us at Sarah's wedding that I'd tweeted with the caption, 'Thanks to my donor, this weekend I saw my daughter marry.' In the end it got over 15000 likes, lots of lovely and encouraging comments and several people commenting they'd signed up because of it. I was pleased, because in a roundabout way it made me feel I'd done my little bit after all.

Just coming back now to all those 'firsts' and having more confidence and energy to do both old and new things - that's what transplant does for people. It is a miracle. Organ donation is the ultimate gift and leaves a lasting legacy. Please sign up to the organ donor register if you haven't yet and please discuss organ donation with your family. It would be wonderful if all those waiting could be given the new chances I've been lucky enough to have. 

Expensive Drugs and Unhealthy Lifestyles!

Someone from the doctor's surgery phoned and left a message. I wonder for a minute or two what they may want. I've been having more problems with my immune system again and getting the correct balance of drugs - could it be about the blood test? Or maybe the blood pressure thing and my recent new drug? Or has my latest clinic letter come through with something that they need to action? I can't think what though? I've just been back up to my transplant centre for more bloods - that's where I was - so everything is sorted for now - as far as I know. 

I phone them back only to be told that they are updating patients' smoking statuses. Really? I know for a fact they have my smoking status already, they've asked me time and time over - even with the nurse recently, over the blood pressure thing, I was asked again. It is strange because no- one has phoned my husband or my daughter to update their smoking statuses! We use the same surgery. 

I keep my cool as I'm interrogated about my smoking habits, after all the person who's phoned me is just doing as she's been instructed. Is this a government initiative? A more local initiative? An initiative coming from my GP surgery? Something like: check up on all your expensive patients and let's see what we can do about them. I don't know.

I really want to scream, 'Look at my records, I've got transplanted lungs - do you really think I'd try and spoil my precious new lungs!' 'Do you know what it feels like to nearly die and then be given a second chance?' I would probably add a bit stronger language to that too - but not on here! I also wanted to add in for good measure, 'No, I've not been a smoker - you know people don't always become seriously ill because they have bad habits!'

I walk down to my pharmacy to collect my monthly prescription. I'm asked if I've time to do a review with the pharmacist. They do this from time to time. I don't mind as I like them to be informed and up to date with my medication, as it is so complex. It is a new pharmacist that I've not met before. 

She is very polite and extremely helpful, but then I get the third degree about my lifestyle: exercise, smoking, eating and drinking habits - to the point of being scrutinised on what I have for breakfast, lunch and dinner. I remain polite in my answers, but have to wonder why I'm even having this conversation about such very personal habits and why I'm even allowing it to continue. 

I do glance down at myself, I know I'm not the slim girl of my younger days, but I still have the correct BMI (whatever that's worth). I didn't think I looked that overweight, maybe I'm kidding myself. Maybe it's because I'm on blood pressure and cholesterol pills? I know this is because of my transplant; she doesn't. She doesn't know yet I've even had a transplant. I find it strange no question has been asked about why I'm on the medication I'm on, just questions about my lifestyle, as though it's because of my lifestyle I'm on medication. 

I can feel the irritation rising in me. Maybe it may be sensible to ask me why I'm on my medication in the first instance rather than trying to try and dig for reasons to blame me. Surely that would be a common sense place to start. 

I'm asked if my medications are working. 'Yes,' I reply. 'Well how do you know?' At this point, I really want to say, 'Because I'm still alive, that's how!'

I politely tell her I've had a heart and double lung transplant and I'm much better than I used to be. I explain some of the medication is preventative such as the statin and I've not been given it because I've actually got high cholesterol and that goes for most of the others meds I'm on too. Us transplant patients have to have drugs to compensate for the harsh side effects of the immunosuppressants. 

I know there are patients who need help with diet, excercise, smoking and alcohol and I know these people doling out the questions and advice are professionals just doing their jobs. I do, however, feel extremely patronised and insulted with these implicit conversations that I've been ill through my own fault; that I've only myself to blame for how I've ended up. I'm fed up of it being insinuated I could start making my life much better for myself if I followed the health rules or had followed them in the first place. I do think the health professionals should know better than to make these assumptions and judgements about people before finding out your history first. 

I cannot help but think I'm being singled out just because I have chronic health problems and I'm on a lot of expensive drugs therefore one of those 'burden' people on the NHS that need to be scrutinised. There are a significant lot of us with genuine medical struggles and we shouldn't be all lumped together like this: we are individuals with individual needs. 

There is a little bit of me wanting to go along with all of this and say what I think would be music to their ears, something like, 'Well for breakfast I start off with my first five a day - oh no not fruit - cigarettes I mean, then my next five - that's creamcakes or sometimes crisps and oh yes I like my juice - I do need to have gin with it though or I can't drink it ...' 

I was at a wedding last year, my heart and lung transplant came up in conversation with a very amiable and intelligent gentleman sitting next to me. 'So did you smoke and drink really heavily then?' he asked politely. I recall thinking to myself, 'Do I really look like a wild woman hardened drinker and smoker?' I hoped not, but maybe I'm deluding myself. I've been constantly asked these insensitive questions time and time again - especially the smoking one. 

I think it says it all really, what a lot of people assume about us with heart and lung disease, but for many of us it couldn't be further than the truth. For the record, I believe in and try and stick to a healthy lifestyle. I've always done this pre illness and post transplant. I'm not perfect, but I do try. I take my health and my second chance of life very seriously.

I wish I knew why I got pulmonary hypertension - there isn't a day I don't wonder. Big money is being spent on research to try and understand why people like me get it. This wouldn't be necessary if it was caused by having an unhealthy lifestyle... if only it was that easy... It is the same for all those other dreadful diseases people endure too. Non of us would be waiting in constant hope for a cure one day, making difficult and life threatening choices to keep stable or stay alive, spending hours on raising awareness and funding for research. 

I know that having had a reasonably healthy lifestyle is why I'm still alive today and probably why I've survived all I have: my illness or medication is nothing to do with me leading an unhealthy lifestyle! 

Has anyone else encountered these condescending experiences and humiliating questions?