Friday, 26 April 2013

MOT Week

This week has been a busy week of check ups and appointments for this, that and the other, as well as being the beautiful, warm, sunny week that we all have been waiting for.

Wimpole Estate
First stop was Monday and a visit to the hairdressers, just an ordinary mundane or pampering experience for most people. This is one that I usually mostly enjoy, but it does bring with it some stress for me these days. The simple action of just leaning over the sink for a hair wash can make me very breathless at times; ridiculously just leaning over a sink uses a lot of my energy in one go and I can feel my body straining to cope. In turn I can feel the Epoprostenol drug start to kick in and my face turning a bright shade of red as the drug does it's work and opens up the blood vessels so my heart can cope, I often look and feel as if I have done three rounds jogging furiously round the block by the time they are towelling my hair dry. With this comes the fear of fainting, which I do not want to be doing in front of everyone in the hairdressers, so I am always a bit anxious until this part of the process is done with. Rob usually drives there and back to reduce my anxiety. Luckily my hairdresser knows me well and all about my illness, but even so I don't like people seeing me like this and I pretend everything is normal and sit there trying to look calm and collected because I don't want to be 'different' than the other customers, although I feel it. My hairdresser has sometimes asked me what the rash is and I have tried to explain that it is strenuous for me to just have my hair washed and it is just my drugs working.

All went well for this visit and as most people do at the hairdressers, I felt I'd had a pampered afternoon out and felt better for a new trim. My body behaved itself for me that time.

Greenhouse at Wimpole
Next was a visit to the dentist on Tuesday for some root treatment. It is important for transplant patients to keep bang up to date with dental checks and treatment as infection can spread easily into the body from the gums and therefore, if your teeth and gums are in bad condition you can be at some risk post transplant. It is one of the stipulations of going on the Transplant List that you have regular dental checks. The dentists is another place I feel quite vulnerable, like many people I don't really like to go to the dentists anyway, but having to lie quite flat, with someone's hands in your mouth when your breathing is already impeded can be something of an ordeal and there is a very real anxiety of getting breathless and then the fainting starting again. Lying flat can also start of palpitations for me, which is another worry. Breathlessness and palpitations usually spell a faint looming in my case and fainting means my  heart not coping and I don't want all this to start happening in the Dentist's chair. But I managed to have the treatment done successfully and mission was accomplished.

I am lucky I have been going to both my dentist and hairdresser for many years and they know all about my illness and are therefore both respectful and helpful throughout every visit. It is really hard for people to understand, as to everyone else passing through the dental surgery or hairdressers I just look like any other person and that's exactly how I want it to be; I want to be part of the real world and I long to be able to feel I could just go out normally without having to think about the consequences of everything I do. It can feel really hard at times to just undertake such casual, normal things that happen easily and naturally every day for most people. I know if I ever have my transplant and it gives me my health back, it will be just these simple things I will be able to do again without stress that I will value the most every single time I wake up in the morning.  

Thursday I had an appointment at the Lister Hospital with the ENT specialist about my ongoing ear problem and to get the results of my CT scan. As I had expected and hoped all was well - well apart from being a bit deaf, which I am told can be normal for my age! I've now been discharged, so that is one less thing to worry about.

My week was rounded off with a visit to the Transplant Continuing Care Clinic for my review. Again all went well here too, just the usual blood tests and checks by the consultant. We met a new consultant today, who was really approachable and lovely and we spent some time talking to Anne, the Transplant Co- ordinator. We also had the chance to meet Bernice at last, another heart and lung transplant patient, who we have been in contact with and was featured in the same news report as us when we took part in ITV's 'From the Heart' campaign. It was lovely to meet her.
A wishing well and sunny skies - guess what I wished for!

So all in all a very successful week. We have now nearly got to Saturday and I feel like I've had a full MOT. With my shiny trimmed hair and my sparkly teeth, I know my heart and lungs are still on their best behaviour and there is nothing sinister about my ear, so all is good with my world! The sun has shined and it's been a lot warmer too, which I think we've all been waiting for and enjoyed. We have, as usual, tried to make the most of the week and have enjoyed the garden and the plants that are now emerging and daring to come out after all the cold; we have enjoyed meals in the sunshine and managed to get out and about in the warmer weather in between all the comings and goings.

After 586 days of being on the Transplant List, I am still on course for having a heart and double lung transplant. It is becoming a bit of a fantasy in my mind after all this time and still feels as far from my grasp as it did when I was first placed on the Transplant List. I am, for now, just grateful that I am feeling quite well and able to keep on enjoying life as well as being well enough to stay on the Transplant List.  

Daffodils at their finest at Wimpole

Friday, 19 April 2013

Sunshine and Flowers and a Bit of Cake

April is meant to be the month of sunshine and showers, but for me, this week has been sunshine and flowers, oh and perhaps a bit of cake!

Pudding surprise
Surprise flowers from a good friend
I have celebrated  a lovely birthday this week with my family and been thoroughly spoiled. We went out for a family meal on Sunday to the Red Lion pub in Welwyn and enjoyed a lovely Sunday roast. Oli got them to do a special 'Happy Birthday' pudding for me, which was a lovely touch. I didn't really think much of it when he disappeared to organise it while we were having drinks, other than to keep asking where had he disappeared to, saying that he'd gone in the wrong direction for the toilets and eventually they just told me he was talking to someone. Well he is always talking to anybody and everybody, so I bought that line easily and the pudding was a nice surprise! I nearly scuppered his idea though when I said I didn't want a pudding and just ordered a cup of tea when all the others were giving their pudding orders, but the waiter was quick thinking and saved the day by persuading me to have a little ice cream at least. It turned out they were only all ordering puddings, so I could have my birthday one!

A thoughtful pressie from Oli and Sarah
Flowers from Rose
We spent the rest of the afternoon in the garden and they insisted I open a few of my pressies as Sarah and Oli would both be at work on my actual birthday.

We also enjoyed some lovely cupcakes that Sarah and Oli had chosen for me, they were all very tempting and different flavours, so it was hard to pick which one to have!

First warm, sunny day of the year, at last enjoying the summerhouse and garden!

Yes I can see myself!
Palm House
On Tuesday I had a visit to the warfarin clinic, which was soon done and dusted and then as it was my birthday Rob had planned to take me to Kew Gardens, a place I've always wanted to go to, which is on my list of places to visit this year. It was a mild, but windy day and there was plenty of sunshine around. Kew Gardens did not disappoint and as Rob gave me a new camera for my birthday, it gave me a great opportunity to practice my photograghy skills.

Kew Gardens is a World Heritage Site and houses one of the world's largest and most diverse botanical collections and it's a beautiful place to visit in spring with some magnificent displays. I think we took enough photographs to make an album on it's own, which I'm going to do and I think we are already planning another visit as there is so much to see there and we didn't have time for everything. It will also be totally different in another season.

Here are a few of the photographs, which hopefully will show how stunning this place is.

Magnolia in the sky

 Inside the Temperate House

Overflowing with blossom

The world's largest surviving Victorian glass structure

Water lily pond

Is it snowing again?

I'm just an old greenhouse!

Princess of Wales Conservatory

Kew Palace

This week has been such an uplifting and enjoyable one and my birthday celebrations have seemed to carry on every day. I'm grateful I have been well enough to enjoy it to the full with my family and friends. I certainly got the warm sunshine and flowers I've been waiting for!

Kew Gardens: disabled parking and it's free; nice and flat for a wheelchair; you can borrow a wheelchair or scooter when you get there; concessions for disabled and their carers; most of it easily accessible; plenty of cafes and benches to take a rest; plenty of those all important loos and a couple of nice gift shops and that's on top of all the magnificent scenery! 

Who said I can't go anywhere exotic anymore!
It's been 579 days of trying to live life to the full and trying to keep well while waiting, I've been lucky to get this far and value every day I stay well. Please sign up to be an organ donor, if you have not yet done so; the link is below.

A sweeping carpet of early bluebells

Monday, 15 April 2013

Elephants and Sheep

Views from Voi Lodge, Tsavo East, Kenya 
A friend of mine recently described the aftermath of her recent transplant assessment as the 'elephant that is transplant'. Anyway that got me thinking about 'elephants' and the 'elephants' that have now taken up residence in my own life.

I have a lovely memory of elephants, when we got married Rob and I were fortunate enough to go to Kenya for our honeymoon and we went on safari. Here we enjoyed many a precious moment watching elephant herds come to the watering holes at the  safari lodges we stayed in and spotting elephants meandering on their way through the grassy, hot savannah to find their next rations of food and water. I can remember stopping in the safari van for quite some time as we all quietly watched a most gorgeous baby elephant just wandering aimlessly along the red and dusty dirt track we were travelling along. I recall it being so cute and endearing I wanted to take it home with me. We also had to be wary when a large elephant bull was hovering in our wake and I remember that being one of a few scary encounters when we had come face to face with the wildlife out there.

Drinking and bathing

Little did I know that I was carrying a baby 'elephant' of my own at this time, that was quietly and slowly growing inside of me, called PH; it didn't really hurt or affect me then, but today it's turned into one of those enormous, scary bull elephants, lurking and threatening as I face it head on, living day to day with it and all the restrictions it brings as well as feeling unwell on a daily basis, which is just becoming normal to me now, but it isn't normal.

Take me home, I'm so cute
On top of that there is the 'elephant' called transplant, as my friend describes, it's another looming, immense, bull elephant too. There is always that hard decision to go ahead with it all weighing on our minds and all the hundreds of questions and 'what ifs' that that decision once made might bring. Whatever you are doing at any moment in your life there is always the thought the call could come at the moment, what is the plan if the call comes at that particular time; there always has to be a plan wherever you are, whatever you do and a plan for everyone else that is involved. There is always the dark threat that you may never get the call and all the what ifs that go with that; that is a no go area in my mind, just so I keep sane, but it is also a reality. Then there are all the 'what ifs' that come with having the transplant; will it really give me a better quality of life than I have now? Will I really feel better after a while and be able to do things again that I can't do now? What if it makes me feel worse? No-one can give us the answers, everyone is different and unique, but it is a chance we have decided to take, because it is the only option that offers real hope. Still it feels like the weight of an elephant on us at times.
Don't touch my baby, I'm a big bull

My other large elephant is my intravenous drug Epoprostenol and living with all that entails on a daily basis; then again, I love this elephant too: I wouldn't be here living life as fully as I am trying to without this elephant, so this one is perhaps the mummy elephant, giving me a good quality of life while I wait, nurturing me on, but being a pain in the back sometimes while she has to do it. There are a few small baby elephants kicking around in my day too, the warfarin and the yo yo that is INR levels. The restrictions of diuretics when really you just want to be getting on with life; sometimes I think my life's new calling could be to be a toilet inspector or reviewer. Woe betide you really, should you dare take the spironolactone and furosemide drugs when you are on your way out!

Visitor amongst the spring crocuses
River Levens
Everybody has their 'elephants' and their own way of dealing with them. For us, keeping busy and trying to enjoy life to the full helps keep our 'elephants' tame and under control. Just after Easter Rob and I enjoyed a week back in the Lake District, here we are lucky enough to have our own place, which we have lovingly restored over the years. We had spent years visiting Cumbria with our children prior to this and I have many childhood memories of holidaying there as my parents always owned caravans in this area. I was also brought up in the North West, so the Lake District was always within striking distance for a good day out and these days it is near to my family, who are still in Lancashire.

The world famous topiary garden at Levens Hall, stunning as always
So it is a very special place to us, we are always content when we are there and there are always new places to explore and favourite places to revisit. When we are there our 'elephants' feel more like 'sheep' and feel further away from us, we relax and unwind and just enjoy being carefree and getting out and about, often just experiencing simple pleasures like sitting by a lake and watching the world go by, or driving around admiring the scenery, especially the new born lambs and daffodils at this time of year.

Post office, Beetham

Foraging amongst the reed beds at Leighton Moss RSPB reserve

Just the two of us, Blakwell Arts and Crafts Centre, Winermere

Pots all bright and tidy now!

Sunshine on the rocks! 
 Windermere peeping through the trees

Only sheep allowed in this house
We had a lovely time and managed to catch up with family in Lancashire, which is only a stones throw away, we tried a few new pubs for lunch and this time just visited places that were nearby, but as stunning as ever. We pottered about locally with our cameras, caught up with friends and did a bit of spring cleaning and tidying about the house.

The weather was cold to start with, but soon began to get milder, with a bit of spring sunshine, which in turn also gave us a lift, I think it has for everybody. We are back home now and it is much milder and sunnier and everything else feels that way too. For now I've brought back some sheep to replace the elephants and things feel easier to cope with.

Just spring lambs now!
I have been waiting for my transplant for 575 days now and one day I feel in my heart that that call will come and things will go well, somehow I just have that feeling that things will be alright.

One day I would like to have a ride on an elephant, perhaps in India or in the Far East. I feel like it should be easy, by the time I get to that point I will have ridden one many times mentally and emotionally and negotiated myself around them over and over again...    

Please help if you haven't already by signing up to the organ donor register, the website link is listed below.

Just learning to negotiate the elephants