Sunday, 24 May 2015

Blood Pressure Business...

Having a transplant requires ongoing medical care and medication for life. The immunesuppressant drugs that are required to keep you well and stop that awful thing called 'rejection' occurring need constant and careful monitoring by the transplant team, so hence I have routine tests every three months, including blood tests, sometimes the blood results come through and it means there have to be medication changes then more blood tests. I usually have blood pressure and weight taken, ecg, lung function tests and an xray. At my last few clinics my blood pressure has been rising...

I sit in the consulting room with the nurse at my GP surgery and she is helpful and thorough from the start. At last I'm having my 24 hour blood pressure monitor fitted. My Transplant Team have requested this following my last clinic visit in February. 

It's taken a little while to get to this point. After clinic I'd been straight to the GP surgery to book a routine appointment with a GP who knows me. I'm told he's booked up for the next three weeks or so, but if I phone next week, they will be releasing more appointments. I try for two other doctors I've also met before, but they've left the practice, so I wait the week and get an appointment for four weeks time. With my complex health needs, I don't want a locum doctor. I think, hopefully, that I should be able to get it all organised and have results for my next clinic visit.

I will add, that should you need an emergency appointment, I have always managed to get one on the same day and this does seem to be the easiest way to get a quick appointment, but it seems a misuse of the system for something non urgent.

Increased blood pressure is a normal thing to expect with a transplanted heart, the immunesuppressants we have to take help cause this and most of us have to go on blood pressure medication, so I am not too worried, as I've been expecting it. I just want to get it sorted and in control before any real damage is done. 

While I wait for my appointment someone from the surgery phones, as they've got the letter from Papworth requesting the 24 hour monitor. I'm advised there is more than a three month wait, so they will put me on the waiting list... A few weeks on, I have my appointment with the GP, he is very understanding and wants to 'optimise my treatment' and an hour later I've an appointment for the monitor in two weeks time, instead of having to wait until June or July.

The nurse is keying all the latest information from my clinic letter into the computer, she is asking me questions as she posts, then proceeds to put in figures for my kidney function and turns and tells me, 

'You obviously have kidney disease then?' 
'Er, um, have I? I know my team have been looking at my kidney function, I had to go back for an extra blood test the week after clinic. No-one has ever sat me down and formally told me this yet though.' 

'Oh well you have and not surprising after what you've been through.' 

'Yes, I suppose so,' I reply. I knew that it would happen really, I've been told the risks, but it's a bit odd hearing it said out loud somehow. 

I come home, a little worried, but not worried, as what may concern some nurses or doctors is often a different story when it comes to transplantation and what the transplant team think. I get my BP results - the nurse phones me up and faxes Papworth. It's too high and she efficiently organises my prescription for a new drug called Ramipril and organises some more kidney function tests and another appointment so she can monitor my care. I collect my prescription and my pharmacist is also really efficient, explaining the side effects and saying she too will phone me in a weeks time to see how I'm getting on. 

So, from struggling to get an appointment, at least when I did, all was sorted and I'm being well supported. I think this 'appointment' problem at GP surgeries is a common one at the moment according to the press. Does anyone else have these problems? Fortunately we do have the emergency appointments at our surgery if I feel I really can't wait and the support is always good.

Luckily, I had my May clinic this week and I asked about the kidney situation. I'm in grade one chronic kidney failure with all I've been through and the harsh meds. It is mild and I'm not really noticing it and the blood pressure control will help things. My consultant is pleased with my progress though, it's being managed very carefully and as he says, 'Most people would rather have a heart that beats and lungs that breathe!'  He is right as usual! I can't disagree - it is a small price to pay and I know that. I also know I'm lucky it's only mild, some of my friends are struggling so hard with kidney problems at the moment and I hope things will improve for them and get better soon. It puts it in perspective. 

So another new drug to start and after my blood test results, a reduction in my Prograf (one of my immunesuppressants) a few more blood tests over the next few weeks and three more months until my next clinic. I'm happy and very lucky.

I'm now on a countdown to Sarah's and Oli's wedding - less than two weeks to go  - excitement is building in our household - this is going to be one massive milestone to reach - one of the big ones...

This week's pictures are taken at Anglesey Abbey in Cambridgeshire.

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