Royal Hallamshire yesterday
Such a long day. To ensure we arrived in good time as we were told the roads would be very busy we left home at 6.30. Yes we missed the traffic and arrived in time to have breakfast in their cafe. We went onto the ward early so that I could get to talk to Patricia Nelson who is a patient there at the moment. I had barely spoken to her when I was called out to begin all my tests 40 minutes early which was a bonus.
I did pretty well in the breathing and the gas test scoring higher than they predicted which was a bonus but let myself down badly on the walk test. This was because my knee on the right side where my back is still bad just kept on caving in and I was fearful of a fall onto their hard floors. A fall is not something I would relish at all. Anyway it was noted as to why I had stopped and even so my score was not a bad one.
On then for bloods and ecg and then a wait for my MRI. This MRI was different to the norm for me. The machine is one I have never been in and is bigger that the normal one. This was being used to get a 4d flow to see what is happening with my heart. The whole process takes way longer than the normal one but it was so cosy in the tunnel and the time just flew. We were advised that it would take some time to process these and so back to the ward to play the waiting game. I did get to see
Alex and Jen for some form filling etc and was to wait to see Prof David Kiely.
I was anxious as we were to collect Izzy from school but the time just kept rolling by. Anyway we rang Daniele who said she could collect her so we were able to wait without the panic.
So some good news and some bad. Yes my heart has deteriorated as we all expected but my lungs were coping pretty well with this though my resting heat rate has gone back up again which I am gutted at. We all went into David's office and Jen was able to point out what was happening when my monitor took account of all the abnormal things happening with my heart. We all agreed that maybe it was due to my back and the pain was pushing up all of my levels and I was having more heart episodes through this. Jen was quick to point out that I had said having the monitor put in place did not hurt a bit and Alex was quick to shoot back that it was because he had done far more invasive things to me which were painful so hers would seem a doddle.
On then to my levels in my lung which though they fluctuate quite a lot had come down over the past ten days. A good sign we all felt. Still though was the deterioration to my heart which needed to be sorted sooner rather than later when the meds might not just work as well with a failing heart. So yes selexipag it will be in around eight weeks time. They want my back to be better and pain free before I begin another med that can cause some side effects. We all agreed that the denervation had helped a lot with stopping my pressures rising over the last two years.
My bloods looked ok and my BNP was measured at 6 which is not too shabby for a patient my age, height and with my condition and weight. It was seen though that my white cells were rather low a lot of the time and they asked if I had been poorly all of these times. The answer was no so quite why they drop so low I do not know but I shall ensure I take vitamins which should help to push them up a little.
So was I happy. Well yes and no. Clearly I would rather we had not seen a change for the worse in my heart but thankful and grateful to those that trialled selexipag and all our teams that pushed for us to be allowed it. See we need to work together to get things done and this is once instance that all the hard work being done by the many and the lovely people that trialled it just could have given me a chance to help my heart to recover for a while. So from the bottom of my stressed out heart I thank you all that helped us to get this medicine.
Now it is back to the real world where I really want to get on and do things on a daily basis instead of just doing very little ` and very rarely. I hate just sitting and feeling useless and I hate that my back is still painful but shallop push through until I begin the new med.
Cla ire Jones
I feel sure you were all shocked and sorry to hear the news that we lost Claire to this terrible disease. She was way too young to die and she was such an inspiration in the world of ph as she showed her determination to continue her work tuning pianos despite having an oxygen tank and feeling rotten. She would not let her illness define her and most of us saw her on the television where they were showing her going about her work in Wales and always with a smile on her very pretty face.I am not sure what happened as I last saw a post of hers in August but clearly something changed in her condition and we lost her on December 13th. Such a sad day for us all and the world of ph and I am sure we all send our condolences to her family and friends. Claire was a remarkable lady and she will be missed so much.
Will I make it.
We have been invited out for an Indian meal tomorrow evening and I am hoping I will make it as I do love the restaurant and the food is divine. I will see how I go but it would be lovely to get out for a while. Whatever even if I cannot go then Colin will have a nice time and will come back and regale me with all the news and happenings going on.
So another blog with nothing of interest to tell as clearly am not up to doing much but thought if I sent it out at least you will know where we are up to with this silly heart of mine.
Swell it is that time of year where lots of parties are goiing on and lots of fun to be had for those that go mad at Christmas! Do not work too hard ad remember to let others help you in the kitchen if you are playing host.
With that I will sign off and hope my next blog is far more interesting than this one. I just might have improved so that I can at least get some exercise in which would be lovely.
Take care one and all and mind how you go if we do get the snow as forecast.
Warm love
Carole xxxx
No comments:
Post a Comment