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.

A Weekend of More 'Firsts'

A few months ago we had planned a couple of visits to the Lake District in July, but because of a few problems I've had over this last month or so and lots of extra hospital visits we had to cancel our plans. This last week has been much steadier and for once we had a quiet weekend and a hospital free week coming up. So, as a last minute thought, we decided we would just drive up to the Lake District and try and catch up on a few of those plans we had been making. 

  

It ended up being a weekend of a few small 'firsts' since my transplant. It started with the travel plans. Over the last four years or so I've been too ill to set off really early in the morning like we used to do. It is a long journey from here and whatever route we take, it is always extremely busy and slow with traffic as I could not manage to set off too early any more. It used to be a much quicker and better journey to set off really early. So now feeling well enough, a small stepping stone for me this weekend was just to get ourselves ready the night before like we always used to and get away on our journey by six in the morning. This was much better, I managed it well and we arrived in Cumbria nice and early. 

We managed to pack a lot into our long weekend. We had an afternoon out by Rydal Water and I managed a good walk for a few miles by the river and up to the edge of Grasmere. We had a look around one of Wordsworth's houses, Dove Cottage and did a bit of shopping in Ambleside.

We took a picnic to Coniston Water and the weather was gorgeous. Now I had been planning this outing in particular for a long time. We always used to go swimming and kayaking here before I was ill. 

I have been working hard on my exercises so I could get back in my kayak once more and kayak across Coniston Water. It has been one of my driving forces in trying to get fitter. I've been trying to do yoga daily and when I felt ready I introduced exercises such as rowing squats to strengthen my muscles so I would be able to kayak. The hard work paid off and I was able to go out on the water in my kayak and probably kayak better than I could before! I feel I had waited for this moment for a long time and it was a very special one when it happened. Of course there was just one person who I thought of when I looked down at that view once more from the middle of the lake. It is something I thought I would never do again and I cannot thank my donor and their family enough for giving me the chance to do this once more. 

Another first was just the very basic fact that I could now wear a swim suit again. Having had an IV drug going via a catheter and pump into my chest 24/7 for three years, I didn't really feel very comfortable wearing swimwear. I can now wear it again with confidence, which is another fantastic feeling. It was a boiling hot day and just perfect for a dip to cool off, well here was another little event happening, but a big one or me, my first swim post transplant and my first swim for four and a half years. What a simple pleasure and I was in one of the most beautiful places to try it out. If I could have bottled up that afternoon I would! 

We also spent time up on Silecroft beach, which is quite a remote area near the Western District. It is a very quiet place, which has miles of sandy and shingly beach. There are often horse riders and kite surfers down there and you can paddle and walk for miles. I just had a paddle, I wasn't sure about the sea water with my new lungs, it didn't look so clear. Rob cooked a lovely dinner on the beach and we sat and watched the sun going lower and lower. 

We then went to visit my mum in Lancashire, it felt ages since we saw her last because we had had to keep cancelling. She cooked us a lovely lunch and we spent a good few hours with her. Next time we are hoping to stay with her for a few days. 

Then it was back home again, feeling very chuffed with all I'd  managed and our last little treat was a visit to Sarah and Oli on our way back. If you have been following the story of Isla, Sarah and Oli's cat that was cruelly shot a few weeks ago, you will be pleased to know they've got a new kitten called Tilly, who has now joined Indie and Freddie, the other cats, and is helping to fill that little gap left behind 

by Isla. 

All in all, it was a very special and memorable weekend.