I’m just going to jump right in today. I hope this reaches you all in good health!
By definition then, as I have graft versus host disease in the liver, I am not healthy. My lungs at the last function test showed capacity was less than half what it was (I've definitely noticed a huge improvement since those 100 day tests, so let's say this has improved), I'm on a tonne of medications and all their joyful side effects and let's not forget the fatigue (I know, how can you forget when I mention it all the time, right?).
My last blood test was a few weeks ago now, the week I returned from my lush holiday. The specialist said he was pleased with the liver function tests, explaining that before the end of the year, they read over ten times that of a ‘normal’ liver. Whereas now, it's a little more like 3-4 times the usual level. So he came up with a new plan meaning I can remain on 10mg of steroids. I was to increase my cyclosporine to 125 mgs twice daily, plus the above mentioned Prednisone and he added penicillin to the vast collection as well, due to all the immune suppressant action going on.
And then I found a lump in my breast.
I rang my GP clinic to book in with the nurse. Before she sent me on my way to radiology for a mammogram and ultrasound, I had to ask her to please check that I wasn’t imagining it, and she said, “hmm I see what you mean “. Not the comforting words I was hoping for as you can imagine! Not to worry, at the scans a few days later, the specialist assured me ‘ it was not showing what we look for, it’s more than likely fibrous tissue'. Phew! Whatever that means, or what they look for, I'm just glad ‘it’ isn’t there! Plus there was the next to useless gynaecology appointment you wait 4 months for (I think all females post transplant get one) attended last week.
First of all, he wasn't a female Dr. Second, he was very young. And thirdly, he literally had no idea why we were there, as the referral had been ‘vague'. He said it's too uncertain whether symptoms are menopausal (probably too much information to be sharing, but we're half way through it now so I’ll just crack on!), or if my ovaries are being switched off due to the immune suppressants. Not only that, but they can't do anything till I've been off those medications for a year. He did say something along these lines though: ‘from these hormone levels, we can see the brain is still trying to communicate with the ovaries to ovulate, but they're being suppressed'. So, I've been on suppressants since my transplant, end of July. Sounds reasonable enough.
After I offer some likely ignored feedback about perhaps in future after receiving a vague referral, they could maybe go back to the referrer for clarification, it occurs to me to ask how recent the blood test was that he was reading from. June, he said. June? June as in last year? June as in pre-transplant? June, when there were no suppressant medication? What the f###! Yes Mum, you’re right, it wasn't a complete waste of time, at least now I'm in their books and won't need a re-referral, but my God! My next check up is in a couple of weeks with the bone marrow clinic, so that might be interesting?
Ok, doubtful, but we’ll see what the specialist says. Oh and he told me a couple of weeks ago that the incessant buzzing in my ears, not unlike the current noise of cicadas, is due to cyclosporin toxicity levels.
So therefore I should call it my ‘un-health’, right? Much like Alice in Wonderland’s un-birthdays!
Hope you're all enjoying this gorgeous weather!