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

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