A Quiet Lull, A Chance to Reflect Spring 2012

Well that brings my story up to date now, so now I can blog freely about all the things that happen to be in my next leg of this journey.

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No hospitals for a little while. Help is never far away and I have just  been telephoned by my specialist nurse to see how I am. If I leave them alone, they don't leave me long or forget about me. I have a few queries about the medications I have been given by the dermatologist for my allergy, which she will check out for me. She also thinks that my next visit which is planned on the day ward in July is too far away and will sort out an appointment for earlier, perhaps admitting me to Duchess Ward following my next planned visit to the Lung Transplant Team in April. That afternoon I have a CT scan booked as well and they might try and squeeze in the PH tests they need to do the following morning. I'm not sure what the scan is for: routine monitoring or to do with the domino transplant that has been discussed. I could phone them and ask, but it is nice to be hospital free. I need to phone in each month to update the Transplant Team on my current health so they have no surprises to contend with should I receive 'the call'. I have three appointments for the patch testing at Addenbrookes Hospital around this time too.

I have been feeling quite well and wonder if I still really need the anti - sickness tablets I am on. I worry that if my drugs are ever increased, they may not be that effective. I decide to just try and do without the one I take in the morning. No such luck that I can do without it, I'm back to where I was twelve months ago and hastily take it again by late morning. Worth a try. I think my medication regime is as good and balanced as it can be now.

Easter flower

In the meantime we have Easter and my fifty first birthday looming. My dad is very sick now and will not recover, it looks like just a matter of time and at Easter sometime we plan another trip to the Lake District and Lancashire so we can visit, all being well. We have the builders back in, this time to spruce up the bathrooms, which are getting very tired. Again, we would like this done before my transplant operation because of the infection risk the dust and dirt may pose. It puts a little strain on me, but there is plenty of room downstairs out of their way to rest, so it is not half as bad as last time.

I feel like I am nesting like I did when I was pregnant with Sarah, keeping busy, getting things ready pending the new arrival, although it will be a new heart and lungs this time and not a baby. It feels strangely similar to a first pregnancy,even including the nausea, which I have worse in the mornings. There is that waiting, itchy feet feeling, that feeling of anticipation of what is to come. You know you can read all you can about it, but it will never really prepare you enough when it does happen. When it does happen you know you will have to fumble through it and it might be one step forward and ten steps back. You don't know what the pain may be like and if you will cope with it, you will have to learn a new regime all over again, this time with drugs, not a baby. You will have a new and very different future ahead of you. It will be a new era for our family.
It is only really now and by pouring my story out in my blog, that I have had time to stop and reflect about all that has happened. It has felt like a roller coaster and now it has just stopped. But it has only just stopped for a little while and I'm not allowed to get off it yet as it is all going to start again, I just don't know when.

Perhaps this is the time I've got to take a breath and be ready for phase two, as I believe phase one has at least gone quiet for now. Somehow I know that phase two is going to be the hardest and I haven't really gone through anything yet, it has only just begun and the roller coaster is going to do a few more rounds yet before I am allowed to take that first step off it.

I do not think I will ever get over the shock of being diagnosed with this illness and then being told I need a heart and lung transplant, and I don't think Rob will either. He sees my illness as his too and is with me every step of the way, he calls it our illness and always has and always insists and is adamant that we will go through whatever is to be gone through together.

Pansies in the garden

Although our match has always been perfect from the very beginning and has continued so throughout our marriage, it is only now that I have really had the chance to appreciate how deep love can be. It is when someone remains devoted to you whatever happens; when someone is happy to wash, bathe and dress you when you are too unwell to do it yourself; when someone will get up at the crack of dawn to make up your medication, day in and day out; when someone shares all your illness every step of the way and comforts you when you are at your worst and in the depths of sickness and despair; when someone is tuned into your movements while they sleep so they can still help you even while they sleep; when someone still sees you as their equal partner and finds you attractive despite everything; when you are able to ask someone to do these things for you and not feel a burden. People say love is tested in these situations, well not ours, for me Rob's love has been the strong bedrock beneath me, never budging whatever the rollercoaster does. Of course the medication has played its major part in my recovery, but my well being and good mental outlook  is down to him and of course my girls. Added to this strong support is that of  the Papworth teams and the several support groups we have joined, and of course those friends, who show compassion and understanding and help me get on with some normality in all of this.  


I feel I am now in 'no man's land', I have overcome 'the enemy' so far, but I'm still aware 'it' is there, waiting, lurking in the depths of me, but I am waiting and ready, head and face on ready for the next attack, when and if  'it' tries to claim me back. Help is on the horizon, will it get to me in time and make me safe once more, free of these burdens? Will the troops come?