Hospital Update Baby Steps To Progress

Just wanted to update everyone on the latest from the hospital. I have had so many messages asking how it went, what happened etc so I think it would be better to have it all in one place!

I last wrote when I had had the appalling appointment with the private Doctor in Liverpool. I had basically left it where he had taken some blood tests and had agreed to do further biopsies of my skin (the outer layer instead of inside my mouth, he told me that skin inside the mouth is not actually skin and being a Dermatologist he couldn’t help with anything internal). This was more of a trying to prove he needed no involvement with me biopsy which to me felt like an unnecessary uphill battle. In any case, moving forward…

By complete luck or chance or whatever divine intervention on the Tuesday after my appointment I managed to somehow catch someone in at the London clinic. I was in a mess and begging the lady to get me some help. She said she would ring me back and I made her promise to! I was so skeptical when it got to 4.30pm and I still hadn’t heard back. But then the phone went and it turned out the Professor was actually in and really wanted to see me. I there and then got an appointment for 9am on Friday 11th December. I couldn’t believe it!

I traveled to London on Thursday night. I don’t drive anymore with this illness having such a negative impact on me, but I got a lift and we set off at midnight. We got into London at around 6.30am. Such a long intense journey. I was so tired. When it came to getting to see my consultant I was practically flat out in the waiting room.

I went in and she sat me down. I explained to her that I had been trying to get through and couldn’t for over a month. She asked had I definitely had the right number because someone should have gotten back to me. She seemed very concerned for me which was rather comforting that someone was acknowledging my state. She was very sorry that there had been issues getting through, I now have various other numbers on which to contact her and an address if needs be. She took notes of my letters backing up my pemphigus antibodies still and of the images inside my bowel with lesions on. She wrote down a list of all of my symptoms and then went through my most recent blood test results to figure out what could be fixed.

I had a lot of blood tests taken, which is a feat in itself with me. My veins are a bit ruined it took three attempts to get blood and they had to use heat packs on me. But they apparently have a very sensitive lab which has a high level of accuracy in determining what exactly the “rogue cells” I guess I can call them are actually doing. I had a low Vitamin D again for which she gave me an injection. I had a raised level of faecal calprotectin which basically indicates inflammatory disease activity in my bowel which would be in keeping with the blood loss I have been experiencing. I still have other raised inflammatory markers. I was given an IV infusion of a steroidal cocktail to try to dampen this down (into my wrist because my veins suck ouch!!!). My normal dose of prednisone has been raised. I am under no circumstances to come off the Azathioprine, this drug is basically keeping me going as far as she is concerned… she said she would not even like to think where I’d be if anywhere without it, and after my appointment with her I am happier to trust that now. There were a few other things that weren’t right but she said she would expect those from me not eating solid food and as knock on effect from my condition. I am on some medication also for my sickness, this also acts as an antihistamine which will help my angiodema and urticaria symptoms too. It makes you drowsy but what’s new there 😉

I also had biopsies taken of skin inside my mouth, stitches in the cheek are not the most fun thing ever lol. Turns out a lot of what the Dermatologist in Liverpool told me was a bit rubbish. She agreed with what he said, that he was truly out of his depth. He’d told me there was no such thing as vesicular bullous disease which is concerning for me that a Dermatologist wouldn’t know that. (You can even google it, it’s there and not just on Wikipedia, on actual medically sound factual sites 😮 ). She explained that a lot of Dermatologists do not get told the importance of checking the mouth for indicators of disease. This is one point I hope that my blog will highlight the importance of to anyone who is seeing a Dermatologist or who is a Dermatologist. PLEASE take notice of this!! She can tell which blood levels are off by looking in my mouth which I find fascinating. The biopsies will hopefully confirm exactly which type of the disease I have. There are various forms of pemphigus and hopefully this SHOULD clear it up. Either way the treatment I am on would stay the same, we’d just have a clearer view on what to expect prognosis wise and how it would develop. Just hoping there will be further answers by February which is when I next see her. She has said I am not to see another doctor – last time I went I don’t think it helped that the other consultant there didn’t know about my condition. They put me in with him when my consultant wasn’t there, she does a lot of travelling and conferences teaching people about rare diseases, so along with some obvious miscommunication with the reception and nursing staff she hadn’t a clue I’d been so poorly. I just remember myself keep repeating to her “I thought you’d ditched me like every other doctor, I thought you didn’t want to look after me anymore because I was struggling, everyone does that”. She definitely didn’t seem like that. She gave me some hope.

I’m not out of the woods yet. I need to see how these steroids affect the disease and get some sort of nutrition down me without being sick, which will all come in time from the new medication fingers crossed! I am at a place where I am seeing some clarity at the gravity of the situation, this sometimes makes me go quiet and not want to talk. Sometimes I want to talk to everyone at once! I’m very up and down on my medication. It’s strong and relentless. But I want everyone to know I am so grateful for every message, like, comment, letter and parcel I receive. Every bit you guys have helped me basically survive by giving me help I need and strength to get through whatever form that may be! I can’t wait to be fit enough to do more and be the Ivy you guys deserve!

Lots of love xxxx