….Things are rather fraught in the Tow-Hunt household. We both have pipelines of medical appointments that are backing up, and I still have 2 more weeks of school to get through, although I’m clearly running on empty….
I seem to be collecting Royal Brompton Hospital appointments at the moment like some people collect stamps. And this is all the more irritating after having arranged in my last big clinic appointment back in February to collate all of my appointments onto Mondays and Tuesdays to make it easy for me to travel up to the hospital, and not have to miss school. But I have now been sent two Monday appointments and two Thursday appointments both of which were on days when I was due to be at school. And the Thursday ones are with my Dietician-somebody I really need to see! In changing one of the Thursdays to another date I then realised I had double booked myself with an important day at school. So today I decided to take the bull by the horns and e-mailed my consultant to say ‘enough is enough’ and ‘please can you somehow arrange for all of these different clinic appointments to fall onto one day and I’ll come up for a mega session of appointments’.
Such is my wonderful Team, that they have already e-mailed me back to say that they are working on it and they’re hoping I will have a major series of appointments on April 19, a Tuesday, in the Easter holidays, which would suit me very well. I also today managed to track down my long awaited blood test results from 25th February. My Aminophylline is a little lower than they would like, at 9.7 and my potassium level is still too low at 3.4. I have also managed to e-mail my Specialist Asthma nurse at the hospital with these results and she has told me I need to stay on the horrible Sando-K for the time being. Ack. I didn’t need to hear that.
So that’s my update from the Royal Brompton Hospital regarding my asthma and clinic appointments.
Julian’s health, however, continues to be a source of concern for us all. He is now having a series of investigations at Charing Cross Hospital in London. He is under a top Endocrinologist but they still do not actually know what is the matter. He has been found to have a raised metadrenaline level which is possibly stemming from some sort of benign adrenal tumour. The next week will be a tough week for us both, with his many appointments, tests, scans and procedures to be carried out: hopefully reaching some sort of diagnosis for Julian in the next few weeks. But it’s likely he may have a Pheocromocytoma.
I thank you all for the many messages of support, prayers and well wishes you have passed on to me. Your support is immeasurable.
….Please bear with me-I am more than a bit rattled by all this that we have going on….