Four weeks and one day after my biopsy on the 21st June and I received a phone call this morning from the hospital. Could I please go in TODAY at 4.00pm?
That’s not good is it? If it’s good news, you get a letter for an appointment, if it’s bad you get a phone call saying come in NOW.
So knowing it was going to be bad news I went in to see my specialist Dr H. I was still there at 6:15 having been told I had Pemphigus and it was very rare and I’d have to be on steroids for years, and possibly immunosuppressants, and lots of other bad things that went swirling around my head. I was on my own as my family have gone to Australia for a once-in-a-lifetime holiday that didn’t appeal to me. I’m sure I missed stuff that my wife Sue would have probably picked up. I think I have rejected the notion that I am going to be on steroids for years. I’m going to get that changed ASAP, and I’m already making plans in my head but I need to do a lot of research first.
But yes, okay, steroids for now. I get it, it’s the bestest, fastest way of treating my condition right now. At the next appointment we would discuss the future and MMF and other “steroid sparing” treatments that might work. I was given some papers to go get “benchmark” blood tests in the next few days and she said she’d booked me in for a drop-in chest x-ray to make sure that there wasn’t anything else going on. I decided to go in on Tuesday 25th July early to get both my blood and x-ray done. All sensible precautions.
Dr H is looking after me to the best of her abilities, I can see that. I like her and trust her which is the most important thing right now I think.
As we discussed my condition, I realised time was moving on, and Dr H told me she wanted me on steroids immediately and that the pharmacy closed at 5.00pm. She made out a prescription for me for Prednisolone, Betamethasone valerate with Clioquinal ointment (steroids for my face and body), and also Cetraben cream to slather on top of that, and sent one of the nursing staff down to the pharmacy to drop it off while we continued to discuss it all. LOTS of things swirling around my head, and I left her office to go down to the pharmacy just before 5.00pm before it closed and managed to get inside the security doors and settle down for a wait which took about 30 minutes.
Dr H had told me to go back up to her office when I had my prescription, and she’d asked two nursing staff to stay behind as they close at 5.00pm too. I had my weight and blood pressure taken and it was HIGH! – no surprise there, and I gave a urine sample before saying thank you and goodnight to them all just after 6.00pm.
Wow. I feel like I’m screwed. I’ve decided to start the steroids etc, tomorrow as I need to let it all settle in, and make myself up a drugs chart so I can keep track and not miss any times. Wow. I’m on my own here, but I let my wife know via text chat and we had a long discussion about it. I know she wishes she was here with me, but I’m VERY happy they’re all having a good time in the land down under.
Wow. I have a rare and serious disease with long term implications as to nasty medicine I’m going to have to take. That really needs to sink in.
