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!

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