Noisy Men – Page 3 – One Man's Noisy Journey

Jul

2017

The Diagnosis

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.

Jul

2017

Health Check Part 2

Today I went for my follow up to get my NHS Health Check results. All good, everything positive really, and no prostate cancer, which is always a worry for us men.

My cholesterol is a little high, as is my blood pressure, but I already know how to fix those, and I’m also pre-diabetic, and I know losing weight and taking more exercise will fix that too. So about what I expected, and I AM going to lose weight and take more exercise from now on. Will power. I have decided enough is enough.

Damn. I still don’t know what this rash is then so I have to leave it up to the local Dermatology Department. Mixed feelings on this and a little bit of frustration. I mean I’m glad I don’t have cancer, but this rash…

The nurse gave me lots of good advice, some I won’t take such as joining a weight loss group as I prefer to work on my own at things like this. I learned a long time ago that me and group therapy just don’t get on. I have strong will power when I decide a course of action, and I can do these things on my own.

But some of the advice about food I’ve really take to heart such as eating more fruit and vegetables, eating boiled instead of mashed potatoes (I’ve always preferred boiled so no hardship there), and not peeling them, just scrubbing them instead and leaving the skins on for roughage. Avoid things like cheese and coleslaw (two of my favourite things, but okay, I understand), and stop eating white bread, eat wholemeal instead as it takes longer to digest – roughage again. And take some exercise! Do some weights as well as walking, sit ups, etc.

All taken on board, and I will gradually increase my exercise as I feel better just from walking. I know not to try to do too much too soon or all at once, and to build up to it all.

Jul

2017

Health Check Part 1

I went in for my free NHS Health Check this early evening at 5:10pm. My wife Sue came with me. I was weighed, had my blood pressure taken (151/91@82bpm – a little high), asked some questions about my general health, exercise, eating etc, and given a blood form to go get some tests done to check my cholesterol, PSA (prostate cancer check) and some other stuff.

Great. I’m really happy about all this. If I could just find out what was causing this rash and it revealed itself in one of the several blood tests I was having, then that would be great and I’d be able to do something about it.

At any rate, I know I’m at that “that age” where I really need to start taking care of myself, get more excercise, lose weight and eat better, so I’m really pleased and this is all good stuff. I was given some leaflets on stroke, eating healthily and had things explained to me.

I went away happy, and booked the follow up for the 12th July so we could go over the results and put together a proper plan of action.

Brilliant, and I’m feeling optimistic that I’d soon know what was going on with this rash and could get it all sorted once and for all.

Jun

2017

Stitches Out

One week after my biopsy and it was time to get the stitches out. I’d removed the sticking plasters a couple of days after the biopsy as I didn’t want the one I’d had problems with where the surgeon caught an artery to start bleeding again. But a week later and it was all dry and clean.

I’d booked into see a nurse at the local surgery a couple of days before and went along this morning to get them removed. I’d explained to her what had happened with the artery, and she was really gentle. I didn’t feel a thing other than a slight tugging and they came out cleanly.

After that was done and knowing I was 50+, she asked me if I was interested in an NHS Health Check. Yes please! She told me to go book an appointment at reception for the following week and she’d check me all out, send me for a blood test, take my weight and blood pressure and give me some advice on how to avoid strokes, heart attacks etc in the coming decade.

I fucking LOVE the NHS. It’s brilliant how you get looked after and it’s all paid for out of your taxes. What a bargain.

So I did as she said, and got myself booked in for the 3rd July at 5:10pm.

Jun

2017

The Biopsy

Today I had a “Punch Biopsy” to try to find out what’s wrong with me. Blood tests etc aren’t really showing anything, at least nothing I’ve been told about, so this looks like the only way. You get a local anaesthetic, and it does not hurt. Trust me.

A punch biopsy is simply a little tool that a surgeon will use to take a small tube of skin from my face in this case. Think something like a very small apple corer type of thing. It punches (gently) into the numbed skin and the surgeon takes the sample out to go to the lab. You just get a single small stitch applied and covered over with a sticky plaster and that’s it. It’s minor, it really is, no big deal at all. They say you shouldn’t drive afterwards and you should have someone to take you home, but really I could have driven, I was fine. Better safe than sorry though, eh?

I had to have two samples taken, one from an affected area and one from a clear spot for comparison. Makes good sense doesn’t it? But… There’s always a story to tell with these things isn’t there?

I’d been through the formalities of who I was, sign this, etc with one of the two nurses before the surgeon came in, and they were both very warm, welcoming and informative. Important stuff to us patients. I was asked if I’d taken any aspirin or was on any blood thinning agents such as warfarin. Nope, I was a normie. This turns out to be relevant in a moment as you’ll see.

All was going well. I’d had the procedure explained to me by the surgeon, once she’d picked up my papers and not someone else’s (hah!) and then she asked me to lie back while she applied the anaesthetic to the two locations on my face. First one was just a twitch, the second felt a little uncomfortable though with a hint of a stinging and a moving feeling. It felt a little… different.

After a few moments for the anaesthetic to take effect, the surgeon took the first sample and applied the stitch and sticking plaster. So far so good, felt nothing. Now for the fun bit. Just bear in mind I was in no discomfort or pain at any time, and me being me I wanted to joke and laugh about it as I found it quite funny, but I restrained myself as I heard the concern in the surgeon and nurses voices. And… I couldn’t see what was going on as it was above my eyeline.

It turns out that just by bad luck the surgeon picked a spot with an artery right next to where she took the sample. It sort of went a bit like this.

“Oh. Do you normally bleed this much?” – I couldn’t see how much that was from my position.

“I can’t see but I don’t think so,” I replied.

“Have you taken any aspirin today or are you on blood thinning agents such as warfarin?” and that’s when I wanted to start chuckling as I guessed there was a lot of blood coming out going by the comments like “press this hard here” and the amount of dabbing and cleaning up around the side and back of my head by the two nurses.

“I’ve just touched the edge of an artery,” said the surgeon. I could tell she was annoyed with herself, but that’s life! Stuff happens and I was okay with it. No pain, remember.

“I’m fine, I’m not in any pain,” I said to reassure her.

I do sometimes wonder why I’m so laid back about things. I know I can be a source of frustration for people who sometimes think I don’t get what’s going on or the seriousness of a situation, but I DO understand and just shrug it off. Life is too short, and it’s my way of dealing with stuff. It might even be a left over from my depression years ago, who knows? (I suspect I’ve always been like this.)

So after a few minutes it must have stopped bleeding and she had to put 3 stitches in and said there might be a small scar. “I’ll tell people I was in a knife fight” I said, which seemed like a good idea as I said it, but no-one laughed. That sort of ruined the experience a bit as I was enjoying it all up to then. I swear I don’t get enough attention day to day. Maybe there was more blood than I thought, they’d cleaned it all up by the time I stood up.

I finally left and thanked everybody for their help, and smiled at my wife when I walked out into the waiting room. “She hit an artery,” I said very quietly, “I’m fine,” and off we went.

Mind you, when I got in the car I had to raise my eyebrows and chuckle when I looked in the mirror. One small sticking plaster on the lower sample spot, and one HUGE one where it all went wrong.

Maybe I shouldn’t have been so flippant in front of them, they must have been a little concerned. Typical me.

Apr

2017

Finally At The Hospital

I finally made it, and today I met some nice doctors including Dr H who was called in by the doctor I saw to take a look, and who as it turns out later became my doctor for this nightmare I was about to experience. I was looked at and “Hmms” were exchanged.

Dr H told me at a later date after the biopsy confirmed the diagnosis she suspected it might be Pemphigus, but at the time thought it more likely to be seborrheic dermatitis because part of the rash was also in my scalp. So I was prescribed a month’s worth of Fluconazole antifungal tablets which as it turns out wasn’t any good for my condition, but none of us knew this at the time.

In retrospect, these antifungals did seem to do something. They seemed to arrest the spread of the rash, but it didn’t get any better. So I’m not really sure what was going on there, but I’ve captured that in my head for further consideration and study. Why did they help? They shouldnt have done a damn thing, but they did.

A month later (I’ve lost the date) I was back at the hospital and was examined by the original doctor and also another doctor was called in. They were both puzzled and I received a “you don’t seem to be one thing or the other.”

Hmm.

I was then prescribed some Protopic ointment which is designed to treat eczema. This caused the rash on my face to double in a week, and I stopped using it after two. It made it worse somehow, and I’m not sure how. Again, a strange reaction to something that I don’t think should have done anything in my case. It’s a puzzle to me still.

Time was moving on and still no closer.

I don’t blame the doctors for this at all. Pemphigus is rare, and Pemphigus Foliaceus even rarer. Dr H hadn’t actually seen a case in her 20 years in dermatology until mine. So it’s no wonder we weren’t getting anywhere.

It wasn’t until the biopsy was arranged for the 21st June that we were to actually get somewhere, and then it took another month for the lab results to come through. All that time, the rash was spreading across my face, scalp, shoulders, chest and back. For some reason the itchiness had stopped thank goodness. Small mercies.

Apr

2017

Back To The GP

At the local surgery again today. I had my referral letter come from the hospital for the 19th May, so that was good. Then a few days later I had another letter saying it was cancelled. I told the GP this and he was very concerned and said, “No, you need to go in straight away.” He phoned up the local hospital and booked me in for 10:00 the next morning. I am very relieved as I’m starting to get concerned now that this has been going on for months with the opposite of progress.

He then asked to look at what remained of my wart, took a scalpel and deftly shaved it down as much as he could, then re-froze it. That was to be the last time as a couple of weeks later it was completely gone. I still think it was the wart that triggered all of this, damn it!

So, I finally get to see a specialist tomorrow thank god.

Did I already say I was very relieved? I’m also now quiet nervous. The GP seemed very concerned, and knowing he used to be a dermatology specialist, I suspected he had some idea that it wasn’t a run of the mill type of rash and that something deeper and more unpleasant was going on.

If that was the case then it turns out he was right.

Apr

2017

And Yet Another GP

Today I saw another GP, this time he actually used to specialise in dermatology, so some knowledge here about what my condition might possibly be. We had a good long chat and he said the rash could have been triggered by a virus and asked me if I’d had a virus around that time in November / December and I showed him the wart that I’d been trying to freeze off with a kit I’d bought from the local pharmacy between the thumb and forefinger of my left hand.

“Yep, it could be that. I’ll freeze it off for you now,” and so he did. It stung a bit, but you know, it’s worth it if it’s actively causing the rash. I’m getting a bit desperate as the rash is still spreading slowly and implacably. It’s in my face too now.

He prescribed 30mg of Prednisolone steroid with a tapering off off by 5mg every few days after the first week, and discussed the dangers of using steroids but that he really thought they’d help in a case like this. I was a little wary, but extremely happy this was getting some attention now. I’ve since been researching the use of steroids and see that yes, they’re very potent and VERY dangerous for long term use, and that this was quite a high dose and should start to shift things. Of course I found out that it didn’t, but it did seem to completely arrest any further development while I was talking them right down to 5mg, but then when I tapered and stopped after about 3-4 weeks, the slow progression started up again.

That information was filed away in my brain for later use.

He told me to come back in two weeks and that he’d refer me to the local hospital, which he did.

Great! Progress!

Mar

2017

Seeing Another GP

Today I went to see another doctor at the local surgery to discuss this rash that’s spreading even more. She prescribed some hydrocortisone cream, but I’ve already tried lots of creams over the last few weeks and they don’t seem to do a thing. I think I need a referral for a biopsy to see what’s going on, but I agreed this time round to try this other hydrocortisone cream first.

I’m not very confident this is going to work, but I’m being a good patient and will try them.

Jan

2017

First Visit To GP

Another backdated post, just for completeness of story. I don’t seem to have the exact date in my calendar, but it was around about now, right after Christmas and into the new year that I went to the local GP to show and tell on the little mark on my left shoulder.

As I said in the first post on this blog, she seemed to think it was an infection of some kind, which I agreed with because it did look exactly like that on otherwise clear looking skin, and nothing like a mole gone bad. I was prescribed some antibiotics for a week, and went back for a repeat prescription as it didn’t seem to do anything, in fact it spread slghtly.

Which of course given what I found out later, ordinary penicillin antibiotics wouldn’t really help, and time was wasting. But who was to know it was an extremely rare (1 in millions) autoimmune disease that most people had never heard of?

It was after this at some point I noticed a couple of marks on my other shoulder and a couple on my chest. At no point in these early stages was I worried as I’d had mild infections in the past – I was born in 1959, so plenty of water under the bridge – and this was just something else. An annoying rash.

How bad could it be?

The Diagnosis

Health Check Part 2

Health Check Part 1

Stitches Out

The Biopsy

Finally At The Hospital

Back To The GP

And Yet Another GP

Seeing Another GP

First Visit To GP

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