From One Weekend to the Next

It's been a few weeks since my last post, so here's a catch up on all that's been happening over the last week or two. Life has been a little hectic with both things we've had planned and things we didn't have planned! 

A few weeks ago we had a fabulous weekend in the Lake District and visiting family in Lancashire.  One of the things I've been desperate to see is the bluebells at Rannerdale. Obviously they can only be seen for a certain few weeks in the year, while the flowers are in bloom and this year our visit was perfectly timed. It's a unique setting where English bluebells flourish on an open fell that runs down to the lake, Crummock Water. We spent most of the day in the vicinity, visiting Buttermere and driving past a variety of other Lakes on the way - Windermere, Rydal Water, Grassmere, Thirlmere, Derwent Water and Bassenthwaite - and then on through the spectacular scenery of the Forest of Borrowdale and the Honister Pass. All pretty amazing and breathtaking and always, however many times I've done this, an unforgettable experience.

Check out my garden blog for more information on Rannerdale. 

The Bluebells at Rannerdale

Honister pass taken from the car

The beautiful Buttermere

Rannerdale

Ted and me enjoying the scenery

Another day we drove through the Western Lakes, via Coniston Water, Broughton-in-Furness and the Duddon Valley and spent time walking on the beach at Silecroft and had a picnic. It was great to be outdoors all day, walking amongst views of stunning scenery and just enjoying the fresh air. Once we were back home I'd kept saying how well I feel and how it's the best I've felt in ages. 

Silecroft Beach 

Ted and me again having a little rest! 

Idling around on the west side of Coniston Water

Magnificent views

A few days later I popped up to my hospital, Papworth, to drop off a box of books so that they can stock and sell 'Life is for the Living' in the Papworth Hospital Charity's gift shop. I'm delighted at this and hope it helps raise some much needed funds. The charity is raising funds to help with the funding of organ care systems, which help facilitate the DCD donor heart programme. This programme has seriously helped to increase the number of much needed heart transplants being undertaken and is not yet fully funded by the NHS. Papworth is leading the way on this programme, being the hospital which introduced this programme in the UK and are continuing to undertake more successful transplants by this method. The programme is being rolled out to other transplant centres and Harefield Hospital are also successfully undertaking the programme too. 

I've also been up at the hospital a couple of times, as I'm in involved with the Transplant Patients' Representative Group and we've been busy planning our next support and social meeting, which is on Saturday 25th June. (Contact me for more details should you be a Papworth transplant patient and wish to attend) We will be having a talk on 'Life as a carer' and our usual buffet lunch and raffle. Also, we've been working on our new notice board in clinic, there's still more to come, so keep a look out if you happen to be visiting transplant clinic. 

Boxes ready to go to Papworth Hospital Charity Shop

Then followed the not so planned weekend, spent in hospital. We were planning a fairly quiet weekend and got up last Saturday morning quite early, as we thought we'd go out early, beat the crowds and buy some bedding plants for the garden. I hadn't been up long when I thought I felt a bit odd, then I felt ok so just carried on with breakfast. 

When you've had a transplant, you do find yourself quite tuned in to what your body is doing, especially when you have to do daily observations like weight, temperature and lung function. I try not to be obsessed, but I do find myself wondering if something is going on at every twitch, twang or ache or pain - it's like a knee jerk reaction I think,  to all the traumas of the last few years, the fact we have it drilled into us by our medical teams and the uncertainty that still lingers there somewhere. Usually in the same split second I can just dismiss it, which I did in this case.  About half an hour later though, I had the same funny feeling again and then I found myself with Rob standing over me on the kitchen floor. 

A faint is a worry for anyone, sometimes it's nothing serious, sometimes it is, but when you have transplanted heart and lungs then you can't dismiss it and wait and see. The nurse at Papworth advised to dial 999, and when we did the operator wanted to stay on the line so they could talk Rob through CPR if needed - funnily enough he'd signed up for and had CPR training at work that week. I'm not sure I can say he was stood there hoping to give it a try, but at least he had some confidence. Then the ambulance arrived. Of course, Ted was all over-excited at all the goings on and the paramedics with their bags, so Rob had to put him out in the garden while they did their initial checks. 

I had to be taken into the local hospital and after going through the resus unit and two acute assessment wards, seen by quite a few doctors - cardiologists, neurologists etc - I went on the cardiac ward to have my heart monitored for the night. They were all so fantastic with me, couldn't do too much and ran every test they could to rule things out. In the end we couldn't get to the bottom of it and on Sunday evening I was allowed home with a few follow up tests still to be done. I'm also going for a full MOT at Papworth in the next few days just to be on the safe side.

It was good to be back home and very uplifting when I received a few cards and letters in the post thanking us for donations to Papworth Hospital Charity and Papworth PH Matters Support Group. The donations were from the proceeds of my book 'Life is for the Living'. I just want to thank everyone who has purchased it, reviewed it and help spread the word about it, as it's thanks to you that I've been able to give donations to these causes that are dear to my heart. 

There's been no more blips since, but I've been mainly resting and using it all as a good excuse to read a few books and here we are again about to start a new weekend. I'm feeling back to myself again - I think - I don't know whether I should dare to say that as the last time I said I felt good...

I know this has been a long one, so if you're still reading - here's to a good weekend for everyone, make the most of the good days and enjoy them.

Here's a few pics of the cards and letters - I just wanted to share as it's also thanks to all of you for supporting my book.

Climbing Hills!

After being told at clinic no blood tests for six weeks and no clinic for three months, I found myself back at Papworth having blood tests again on Friday! When my blood tests came through after clinic, my white blood cells had jumped from being too low to too high! So I had to be put straight back on to the Myfenax once more, not on the suggested lower dose we discussed, but back on my old dose. So the saga of the Myfenax continues on, with more blood tests now booked to keep an eye on things. 

One of my blood tests is due on Christmas Day and I told the GP's receptionist that even if they are open, I definitely won't be going for it! We had a laugh - I'm fed up with the Myfenax now - so I'm trying to laugh about it. I do know it is nothing to be bothered about really, compared to what I've already been through and what others have to go through. 

We went straight from Papworth to visit family in Lancashire. It was great to catch up with my mum and sister and my sister's family and stop over for a few days. We then drove up to the Lake District. 

We decided to go for a walk on Sunday, it was a very bright sunny day, not one you'd expect for November. There are so many places to visit, it is always hard to decide where to go, but we went to Gummer's How on the south eastern side of Windermere. It's a place we've been with our girls before and as you climb the hill, there are fabulous views. 

The views stretch out across the Coniston Fells, Central Fells and over Lake Windermere and beyond Newby Bridge. From some areas you can see right across to Morecambe Bay even. It was a perfect day to take in the views. 

 The walk starts from a Forestry Commission car park just across from the hill, which is 321 metres above sea level and is only about a mile and a half. Gummer's How is one of the highest foothills in the area though, so I'd forgotten how steep it gets - well for a person with transplanted heart and lungs, particulary the lungs - very steep. So a short walk, but a bit of a challenge for me! 

As we walked the first part through a field and some woodland, the path was just a gentle incline and the views across Windermere were stunning in the sunlight. 

Then came the first leg of the steeper bit...

I managed it though and made it to the next part...

More stunning views appeared, but it was time for a little rest for me as I was getting a bit breathless. We then went on and on and on ... up higher and higher...

I managed to get to the top of these craggy steps, but then I couldn't make the last bit up to the summit. My new lungs were all puffed out and I'd got myself too breathless. It was time to stop and get my breath back, which took a while and I was a bit disappointed in myself. Rob carried on to the top, but I stayed put as I thought I'd pushed myself enough. I didn't like the idea of having to try and get medical help stuck up on a hillside; however, I do like to try and push myself just to see what I'm capable of now! 

While I enjoyed the views, I changed my mind about being disappointed. I thought of where I have come from over the last few years and how before my transplant I would have struggled just walking up the incline on the road from the car park to the gate to the field and realised just how far I had now come, managing to clamber up most of that hillside. I know I'm lucky I managed to get that far and decided I would be proud of that, rather than beat myself up for not getting to the very top. 

This is the view of Gummer's How from the edge of Lake Windermere: when I see this I can see I managed quite a lot really!

Wainwright, the renowned Lake District fell walker, said if you fail to reach the summit then it's time to invest in a pipe and a pair of slippers rather than walking boots. Well I say I did pretty damn good in the circumstances and my walking boots still have a very long way to walk yet! But, yes, I do like my slippers too now and again!

After our little bit of hill climbing, we went down to Lake Windermere, to Fell Foot Park, where we watched the last of the autumn sunshine disappear over the lake and go down behind the moutains. 

Then it was time to get warm and have a well earned cuppa at the Swan Inn at Newby Bridge and drive on to the Strickland Arms for an early Sunday roast dinner. Pretty much a perfect day and as usual there was someone we were thinking of, someone always with me, my donor, who has given me yet another beautiful memory. 

My Tarn Hows Challenge

Last week we were in the Lake District at long last. It was third time lucky.Twice over the last few months we have packed and been ready to go, then weather forecasts of gales have stopped us in our tracks. It is already a long journey there and as I'm still recovering from my transplant we didn't think it very sensible to be travelling in gale force winds and heavy rain. 

I have been carrying a dream of being able to walk around Tarn Hows once more since I have had my transplant. Walking in the Lake District was something I had done all my life up to the last four years. I had already come to terms and accepted that it was something I would never be able to do again and then came the chance of transplant and hope. 

As soon as I began to recover and the physios got me up and moving I began to realise that the possibility of going for a walk again was very real. The dream of doing this and walking once again in the Lake District gave me the motivation to try really hard with my physio, even on days when I didn't really want to  do it, as I knew my dream wouldn't ever come true if I didn't. I kept thinking of the beautiful walk that trails all around the scenic Tarn Hows and had it firmly fixed in my mind that that was the walk I was aiming for as soon as I felt fit enough. 

So I focused all my efforts to build my fitness up and trying to build up my strength again with Tarn Hows and it's stunning walk always in my mind and motivating me on. 

The forecast was rain for most of the week, but there was no way that was going to put me off. It was a very bleak, cold and dismal looking day, but I was well prepared with all the usual gear. I even had my waterproof 'over' trousers and a waterproof over my coat, so I could stay warm and dry. I didn't want catching out with getting too wet or cold half way round. I'm fiercely protective of my new heart and lungs - especially my delicate new lungs. 

I have built up my walking to two or three kilometres now and use a pedometer to measure what I've managed. The walk around Tarn Hows is about three kilometres, but there are also a few steep gradients, which make it a little more difficult to what I've been practising. 

Here I am all set and prepared! Laden down in waterproofs, but I'm confident I can do it. 

There are lovely views even in the dismal rain and cloud. 

There was a bit of a wind blowing up and the trees were having a good old creak. I wasn't sure whether some were that safe after all the gales we have had in winter. It did cross my mind more than once, that I've been through all that illness and then a huge transplant operation and now I'm going to get knocked down by a tree! 

You see what I mean? There was lots of evidence of all the storms we have had. 

Half way round and time for a five minute stop and to take in the view down the tarn. 

Up the hill and through the woods, working our way round we go! 

Still a way to go, but on the homeward stretch back now! 

Back to base, I've done it! Dream achieved! 

I had believed I would never be able to do this again over the last few years and here I am home and dry - yes dry, the rain held off, it was that blowy! The only thing that was missing was the sunshine - it was always blue sky, fluffy clouds and sun in my dreams! 

It is a very strange and surreal feeling to find yourself doing things you believed you would never do again, it is a feeling I just can't get used to or really quite believe. I can't help but wonder if this feeling of amazement will ever cease to go away, I'm not sure I want it to either: while I have this feeling I know I appreciate every minute of the new life I have and every step I take! 

Completing my walk and my dream on this day was simply in honour of my donor, who has given me the wonderful chance of having my life back again. 

Walking, Walking, Walking!

Crocuses shining in the sun at last! 

It's a gorgeous sunny Sunday: the sun is shining at long last after those horrendous gales of the last few days. Friday night's gale had kept us up on and off for most of the night and we spent Saturday feeling tired and fed up of the continuing miserable weather. It was like a rare treat at last waking up to some sunshine and a calm day.

Walking? Me?

I stood at the foot of the lake at Wrest Park in Bedfordshire. I'm wearing my wellington boots, because it's been so wet and the grounds are muddy. There is nothing odd or unusual about that to anyone, but for our family it is another 'first' to celebrate. We are posing like tourists while Sarah takes a photo and laughing because I've just walked a good kilometre or so from the cafe to the lake. I've only ever been to Wrest Park since I fell ill - it's only been open this last few years- and I've only ever got to the end of the lake in a wheelchair before now. I'm grinning like a cheshire cat, not quite believing I've been able to do this and that I've still got loads of energy left for more. 

Stunning statue

Has the wind not blown you away yet? 

We wind our way further along by the moat now, treading carefully through a minefield of fallen tree branches - a reminder of the previous day's weather - but enjoying the warm sun, the views and the waterside. 

A crisp day for reflection

I'm snap happy with my camera, everything always looks so different and more beautiful in the sunlight. There are a lot of people out and about, I think everyone is uplifted to see the sunshine and they've all had the same idea to get out and enjoy the day. I'm feeling uplifted too, but I'm also amazed yet again at what I'm managing so easily to do. Walking, just simply walking! Walking a long way, walking at a good pace, walking normally, walking in my wellies! I feel like jumping and singing and cannot quite believe I'm having a walk around this beautiful place at long last: no wheelchairs, no walking sticks, no stopping to catch my breath, no searching for the next bench to sit on. I cannot quite take it in. It's a simple everday thing, but for me it's enormous.

This time I got to climb the steps and admire the view from the bridge

Snap happy! 

I just wanted to keep walking on and walking on and walking on. It suddenly felt alien and new as though I shouldn't be able to do it, but then I can. My family laugh at me when I tell them to get a move on. They cannot quite get used to the idea of me walking at a faster pace, they have got used to walking slowly with me and now they are having to speed up. They all complain that their legs are aching, but my legs want to just carry on and on. I think my legs are enjoying the novelty of it! 

Just ambling and enjoying the views

Sunshine in the orangery

We wander back to the cafe and shop and I reckon I've now managed to walk nearly four kilometres without a rest or sit down. I still feel I've got energy for more, I can't quite believe I'm able to do this so soon - just four and a half months post heart and double lung transplant. 

I always had a dream while I waited for my transplant that I would be able to don my walking boots and walk around Tarn Hows in the Lake District once again, just like I used to do. This dream kept me going while I waited the long hard wait for my transplant. After my transplant when I felt weak and was struggling at times, this dream drove me on every time the physio came to see me in hospital and I really only wanted to curl up in bed and rest: to get my dream I knew I had to put a false smile on my face and do what I was told instead. This dream drove me on when I first came home and wanted to lie on the settee and rest away the trauma of the transplant: I knew I had to try and get on that exercise bike and keep practising walking if I was to get there. 

 I know this dream is about to come true now. I just need to wait for the weather to improve and the gales to stop so we can actually get to the Lake District at last: it will then be, 'Tarn Hows here I come with my walking boots and all!' I will be living my dream. 

Transplant changes lives and makes dreams come true! 

Statues in the sky