Tuesday, 25 February 2014

Five Months On!

The church at Tewin
Today it is five months since I got my life changing phone call. Time is moving on and life is moving on. I am well and truly back on my feet and feeling much better than I did pre transplant now, following those initial months of recovery. Achieving this and getting to this stage was what having the transplant operation has been all about. The whole aim was to get a better quality of life than I was having beforehand and for me it feels fantastic that I have now reached this point. 

Tewinbury Farm
It has been an amazing journey so far and there has been a lot of stages to get through in a short space of time: from those traumatic days in ITU; the beginnings of recovery on the surgical ward; those first uneasy days at home; the following constant clinic visits and the many brochoscopy procedures, to where I am now - having a five week break from clinic with no future bronchoscopy in sight!

Interspersed in all of this have been moments of great triumph and moments of despair, but the important thing for me is that my family and I have ridden all those early stages now and we have determinedly tried to keep moving forward step by step whatever the setbacks. We always knew it wouldn't be easy and we accepted this from the outset, enabling us to take the difficult parts with the good.

The Herts Wildlife Trust Reserve at Tewin

From the beginning I knew that I had to build my strength back up after being so ill and going through a major operation and all the traumas that followed in those early weeks. I remember feeling so weak at first and felt frightened if I had a setback, such as getting an infection or rejection, I might not be strong enough to fight anymore, having already fought such a hard fight. I set my mind to it when I first came home that I really needed to eat well and get exercising so I could fight the next round when and if it came. I think doing this has carried me through and I've now managed to get myself fitter and stronger to where I am now. I'm still very focussed on keeping this up, the thought of a setback happening still motivates me all the time.

 The freedom of a walk and fresh air!

From hardly being able to eat much in those early days, I'm now able to eat normally and have got my healthy appetite back. It was difficult to eat solid food in the early days after the operation and then came the medication overload and the constant coughing, which upset my stomach often; the constant bronchoscopies upset my stomach really badly and even gave me quite serious allergic reactions at times. 

I had to be wary with the food I could manage to eat and it was trial and error what my stomach could cope with or not at times. As a transplant patient there is also a long list of foods you aren't supposed to have because of your poor immune system too, limiting me even more. Eventually now my medication is reducing and the bronchoscopies are finished for the time being, I'm eating more normally and testing out more and more foods and managing them. So things feel much easier and more settled. 

Sherrardswood Park

I've got used to the medication routines now and that feels more settled too. The medications that were more limiting such as diuretics and nebulisers are gone now and life feels free from those restrictions. It's now just a case of tablets, lots of them still, but they can be put in your bag and taken out and about with you. In fact I could stop out all day and night now if I really wanted! That feels a great thing after the intravenous drugs of my Pulmonary Hypertension days and those earlier days of my transplant. 

So five months post transplant and things are still very positive and looking good. There are still more hurdles to come yet though, but that is all very normal in a transplant journey. 

I am currently at the stage where my medications need to be adjusted. They have recently taken me off an anti - fungal drug, Itraconzole, which has affected my Tacro levels, so my Prograf drug dose was doubled. That still didn't settle my Tacro level, so my Prograf dose has been increased again. I've had to visit my GP a few times now with all the medication adjustments and things, but that has been a good thing too as I feel he is getting to know about me and my transplant better.

With the increase in Prograf has come a nasty side effect of hair loss - I had been warned about this by the Transplant Nurses - I'm not quite sure how bad it is going to get yet, but hopefully it will settle once everything else does. I have quite fine hair, but luckily there is a lot of it, so it isn't showing yet and I'm hoping that's how it is going to stay.  

When my Tacro level does settle they are going to reduce my steroid, Predisolone, but for now that has to stay a high dose until it stabilises. These things just take time I suppose. 

A little bit of late sunlight peeping through!

They are also moving on to looking after my new heart now things are more settled. I've already been prescribed a statin now as a preventative measure as arteries in transplanted hearts fur up more easily and they are keeping a watchful eye on my blood pressure. Blood pressure can tend to get high with a transplanted heart, so there may be blood pressure tablets to come yet in the near future. 

A peek of blue!

I still have a chronic cough and now the problems with the healing join in my windpipe are sorted, they are planning some further investigations in the next few months. They are going to undertake a 24 hour PH test to investigate if there is acid from my stomach coming up to my esophagus and causing the cough. This reflux, if it is there, will also potentially cause permanent damage to my new lungs, so if it is present I've been told I will need to have an operation to tighten up my stomach to prevent it happening. 

I've also got problems with my small bowel and intestine because of all the severe reactions I have had to medications over the last few years and I have been referred to a specialist about this. Again, I may need more surgery to fix this. 

Someone needed a rest. It wasn't me this time!

I'm trying not to worry about any of these things though, in my mind they can just be crossed as I come to it and if surgery needs to be done, then it needs to be done and there isn't much I can do about it other than try and be as fit and strong as I can to deal with it. 

Sometimes it's a never-ending path!

So five months post transplant and there is a lot behind me now and still more things to face, but the most positive thing is how much better I am now than I was pre transplant. I have so much more energy and can do so much more physically now. It always feels amazing from simple things I couldn't do before like enjoying a proper shower to bigger things like being able to go for a proper walk now. 

Sometimes it's the simple things that feel special, one little thing I've noticed recently is how I can wear heels again. Before transplant my legs and feet ached so much all the time it was impossible to wear anything on my feet that wasn't flat or nearly flat, now I'm back wearing my shoes with heels! And belts, what's special about wearing a belt? Well when you have had a pump stuck on your waist for three years, it's just wonderful to get your waist back again and wear a proper belt. 

Which way? If we get lost at least I can walk now!

I think the best feeling of all, is that one of well being, the feeling that I've got some strength in me at last and renewed energy to do things. For now, I am staying focussed on this and enjoying all the positive things that have come from my transplant and the new quality of life it has given me. I'm just simply enjoying living life properly again!

Enjoying one of my many walks and taking lots of pictures!

Saturday, 22 February 2014

Afternoon Tea? Why Don't You?

We had a fabulous afternoon at Luton Hoo last week. Luton Hoo is a large mansion house, which is now a five star hotel, on the borders of Hertfordshire and Bedfordshire. It has some stunning formal gardens designed by Capability Brown and is surrounded by glorious parkland and meadows. We were delighted to have received a Christmas gift of an afternoon tea there from our friends Ilaine and Richard. 

The present house was built in the 18th century, which makes it a perfect venue for a traditional English afternoon tea seeing the concept of 'afternoon tea' was developing at this time; however, it was during the early 19th century which really saw a rapid rise in tea consumption, as the upper classes increased the tradition for serving afternoon tea following a trend set by Anne, the seventh, Duchess of Bedford. She started taking a light meal of afternoon tea each day, then started asking her friends to join her. This soon developed into her throwing big afternoon tea parties and this trend soon caught on amongst the upper classes and everyone began throwing afternoon tea parties. 
The demand for tea increased greatly, resulting in the 18th century clipper ship era, where regular tea runs where made between India and China by ships like the Cutty Sark, which is now based in Greenwich, London. 

Eventually, as people began to travel more and more, many of the big hotels began to serve afternoon teas and tea shops began to open up everwhere. A traditional afternoon tea usually includes a range of sandwiches, various cakes and scones, jam and clotted cream, typically served with loose leaf tea in a pot and sometimes a glass of champagne. 

Nowadays we still enjoy our tea and cakes amidst our busy lives as we stop to enjoy a break from shopping or sightseeing. It is more of an occasional luxury or treat though to be able to get dressed up in your glad rags and enjoy an afternoon tea in a large country house or fancy hotel together with a glass of champagne. 

We had been really looking forward to this, getting all 'poshed up', visiting a historic house and enjoying a treat of sandwiches, cakes, scones, tea and champagne. We weren't disappointed. The service was very attentive and we felt well and truly pampered. They presented us with a beautiful platter of cakes and scones and as I am unable to eat various foods because of my poor immune system they went out of their way to provide sandwiches that I could manage. They offered us a selection of various teas, brought as many fresh pots as we needed and even poured it for us! Then we rounded off the feast with a relaxing glass of champagne. I am allowed a glass of alcohol now and again and it's nice to be able to relax and enjoy one now that I'm feeling much better than I have for years. 

It had been a very stormy day, but as we were ready to leave, the sun was peeping through and shining on the stunning gardens. We could see the sweeping view through a very tempting pair of glass doors as we left, so we decided to venture out there and explore, as usual, a camera to hand. The sky was looking stormy and at the same time very spectacular as the late afternoon sun was about to set. It cast a beautiful red glow over everything. 

We wandered around the gardens, admiring the views and I was deep in thought about what it would have been like to live in those grand old days of glamorous afternoon tea parties - I think I had been enjoying myself too much, had got myself into the spirit of things and have watched a bit too much of Downton Abbey! I was abruptly brought back to earth as I skidded on the slippy pathway: the paths have suffered with all the wet weather and were mossy and slippy and I did have my high heels on after all! Luckily my balance is back and my legs are strong again following my transplant and I managed to save myself from falling. 

Returning to the 21st century once more, I suddenly realised how different life is today. I wouldn't have survived my illness if I had lived back then as there were no such things as Hickman Lines and no medicines for Pulmonary Hypertension, no technology: in fact Pulmonary Hypertension wasn't even heard of. It is only a recently identified illness and work is still in progress to find more effective treatments and a cure. Fortunately for me, the drug Flolan had been developed and it helped stabilise me until I could receive yet another feat of modern medicine and science, my transplant. 

I think we are blessed to live in these times and I couldn't help but feel, yet again, as we continued to walk around the grounds, how lucky I have been. A truly modern day woman, in my own quirky way, and not through fashion, not through lifestyle, but with what I always carry within me. 

As I looked up to the sky and saw the red glow of the sun shining out through those dark storm clouds I thanked my donor and their family once again that I am able to enjoy these precious moments in life. Somehow it seems an aptly timed moment after such a perfect afternoon.

Monday, 17 February 2014

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

Thursday, 13 February 2014

Sunshine and Snowdrops

Snowdrops and sunshine at last!
I was back at the Transplant Clinic again this week for all the usual tests and this week I escaped having to have a bronchoscopy, so it was just a morning visit. After all the tests, I saw the consultant and transplant nurse and they said they were really happy with me. My lung function is now up to 90%, it has got better each clinic visit and my new lungs looked good on the x ray. My last bronchoscopy results were looking really good and the part of my windpipe that they have been watching closely for the last few months has now healed nicely. They explained I wouldn't need to have any more bronchoscopies for this now as all is fine, so that was fantastic news. 

The snowdrop walk

They are still tweaking my medication and have stopped another drug called Nystatin, which I had to take four times a day, so I was pleased with that too. They are also planning to reduce my steroid drug, Predisolone, once they are happy with my Tacro levels and that my Prograf dose, which they adjusted a few weeks ago, is correct. I am just awaiting a phone call following my blood test results then hopefully it will reduce.

Crocuses enjoying the sun

They also explained that they need to start giving me more medication to help my transplanted heart and they will be focussing on this a little more now. This is for preventative reasons and not because there are problems with it. The arteries in transplanted hearts can become furred up quite easily, this isn't because of diet or anything, they just do for some reason, so they have prescribed me a statin for this, Pravastatin. We had a bit of a laugh about this, because Rob has just been prescribed a similar drug for his cholesterol, which, because of genetic reasons, is high. These drugs have to be taken at bed time, so we had a bit of a joke about how we would be able to share them and take them together when it was time to go to bed! It all seemed very apt, as it was on the radio and in the press that day saying how doctors have been given the go ahead to prescribe statins to help prevent strokes and heart attacks and there has been a lot of debate about whether this is a good or bad thing. I think in our cases, it can only be good!

Peeping Snowdrops

They also explained that they will probably need to introduce blood pressure tablets too at some point, but I seemed to get away with that one for now!  It seems to be a case of losing some drugs and then gaining some more. I'm still on 18 or 19 tablets a day, depending on what day it is, but it still feels a lot easier than my Pulmonary Hypertension days and the intravenous drugs. I just rattle now instead!

A little bit of colour in all the bleak!

So all in all it was a good visit, all is going well and I now don't need to go back to clinic until the middle of March, when I won't be too far off being six months post transplant. I am getting on for 5 months post transplant now and don't know where the time is going.

We decided to enjoy the rest of the day after clinic and went to a pub called the Poachers in Elsworth, which is near Papworth for lunch. This was a pub that my family visited while I was in hospital following my transplant. The transplant nurses had recommended it while they had long days and hours visiting. It was nice to see where they had been as they keep telling me stories about the nice pubs they had found. I think I have one or two more to visit yet! 

A dwarf iris flowering in the sun

While we were in the pub, the weather turned very nasty and the gales started blowing up again as well as the rain setting in yet again, so we had a bad journey back home and were glad to get in and batten down the hatches again. We had been planning to go to the Lake District for a few days and had already packed, but seeing the forecast of gales, gales, rain, rain and more storms, we decided to abandon our plans and stay put. This is the second time we have been all packed and ready to go to the Lakes and then had to change plan because of the awful weather. We aren't complaining though as we are having it very easy compared to thousands of people who are struggling with floods. 

First signs of blossom
Today has been the first day of the week that we have had some sunshine, a little bit of respite before the next storm sets in tomorrow. We went off to Benington Lordship Gardens to have a look at the spectacular display of snowdrops and winter flowers. I felt determined to find some colour amongst all this dismal grey we keep having to put up with! Benington Lordship is a seven acre garden standing on an ancient fortified site and is famous for its display of naturalised snowdrops, there are over 200 snowdrop varieties as well as other winter flowers.

Hope you have enjoyed the pictures taken at Benington of the flowers and the little hint of spring, it must be somewhere hiding nearby and ready to pop out! Come on spring, we are all ready for you!

To a Snowdrop

Lone Flower, hemmed in with snows and white as they
But hardier far, once more I see thee bend
Thy forehead, as if fearful to offend,
Like an unbidden guest. Though day by day,
Storms, sallying from mountain-tops, waylay
The rising sun, and on the plains descend;
Yet art thou welcome, welcome as a friend
Whose zeal outruns his promise! Blue eyed May
Shall soon behold this border thickly set
With bright jonquils, their odours lavishing
On the soft west-wind and his frolic peers;
Chaste Snowdrop, venturous harbinger of Spring,
And pensive monitor of fleeting years!


'Harbinger's of Spring'