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12 Months of Thumb Twiddling

Well the 31st October has been and gone for another year. For most and me, normally, it means costumes, parties and sweets.

I wasn’t particularly inspired this year. The 31st October 2013 marked a full year since I was sitting in St John’s Institute of Dermatology at St Thomas’ Hospital being told that I would be getting answers about my condition and be told what it will mean to the rest of my life. I haven’t been back to St John’s since.

The last time I heard from the department was in on the 25th September, on the 27th July I was told the preliminary results had shown a mutation and the full report should be concluded within the week.

I have had my fair share of shit from Hospitals over the years but this is taking the biscuit really. I understood when I was told that due to budget constraints the testing could take a while and I patiently waited for it to be done, but then having to wait 111 days for an explanation beyond you have a mutated gene is a bit much really.

The positivity my first meeting with St John’s brought me has well and truly been drained away, and they are now added to the hospital departments have let me down and provided me with an absolutely pathetic services. The good list is still unfortunately limited to two, people not departments.

Sitting, Waiting, Wishing

Raise your glasses to another 3 months of sitting around and doing bugger all about my low blood levels.

My haematologist has decided that we will continue to monitor my blood levels. Ya know, because doing nothing for 6 months has been productive so far, why not wait another 3 months before a decision is made.

Essentially this is where we are;

  • My levels of haemoglobin, platelets and white blood cells have all been fluctuating by a few decimal places every couple of months, but all are below the acceptable range.
  • My bone marrow biopsy indicated I have empty bone marrow, i.e. it is not producing blood cells.
  • I have an enlarged spleen.

This has been the case since the 18th of December, I make that 176 days of doing diddly-squat and it will be 266 days or 73% of the year, before any action could be taken.

There was some progress, we have been able to conclude that it is very unlikely to be drug induced, and therefore I have been allowed to start back on one of my tablets. YEAY

A job well done

After the short notice, my operation went very well and I have spent the last 3 weeks recovering. My swelling has quickly gone down and to the outside world it is nearly impossible to tell that I have just had surgery.

The operation was fairly quick and easy. They removed a fold in my skin, the result of a previous operation, revised my scars and gave my face a little bit of a tug for good measure. I must say, from what I can see Mr K has done a wonderful job on my scars, so it was all worth it.

A smooth recovery has been extremely important to me this time around. I have a feeling operations will be pretty regularly every couple of years, so I tried to hone my skills to become a slick recovery machine, basically I tried to delay chewing for as long as possible, I think I lasted about four days, then the Haribo beat my will power. I fared a bit better with my TV challenge, which consisted of watching lots of it, so you know, you win some, you lose some.

I see my surgeon again in 3 weeks time for the big A.OK and a bit of self-congratulation. He took the time out to explain what he thinks the NEXT operation will be so I am sure to be added to his list again, lets hope I get a bit more than 3 weeks notice in a couple of years time.

One thing this surgery hasn’t helped is my knee. Being half way through a 9 month recovery from ACL surgery and then having to spend 3 weeks laid up recovering does not help progress. It feels like I have fallen back about 2 months in my recovery. Oh to have a body that is fixed not constantly in a state of repair.

It is back to the blood doctor tonight, for another chapter in my saga.

A story about how my life got twisted upside down, Again

Well I have had quite the week.

Last night was my appointment with my Haematologist to discuss my latest set off blood results and formulate a plan of action to try to make me better. Well that was the hope I had about week ago, but everything has spiralled out of control a bit.

I have now been off all my prescribed drugs for 4 months, and although my blood cells numbers have improved there hasn’t been a great increase and the levels seem to have fluctuated while on the long-term decline, if you look at my history of tests. So no great news there, but no need for drastic action, which given my other news was a bit of a blessing.

A week earlier I had been informed by email that I have been scheduled for another facelift at Chelsea and Westminster. OH HOW I LOVE THE ADMIN SYSTEMS. Now as this blog has previously explained, I think my surgeon is the bee’s knees and he deserves a big high-five, but that hospital has one of the worst admin systems I have ever seen. I last saw my surgeon two and a half years ago, or six months after my last operation, and he put me on his list for surgery. About a month later I was asked to come in for a pre-operative assessment, and since then I have had diddly-squat. That is not quite true; I received a single letter last year from the surgical director’s office explaining that I was still on the surgery list and to contact them if I wanted to be removed.

At 3:50 pm on the 23rd of April I received this email telling me I was scheduled for surgery on the 16th of May. Now I have to attend the hospital at 7.30 am, so I make that 22 days, 16 hours and 20 minutes warning ahead of my surgery and for my work, from where I am likely to be signed off for a minimum of 3 weeks, that’s 21 days if you’re wondered.

So the outcome of a very stressful, depressing and frustrating week is that I will be having surgery, AGAIN, and the problems with my blood will be monitored for another six weeks at least before any decisive action.

It feels like my haematologist has been given a reprieve from having to make any kind of decision.

Oh and remember those pesky “doctors” at St John’s at St Thomas’ well they are doing nothing. So there are still no answers but they are going to cut me in the meantime.

HOORAY FOR HOSPITALS

I now have a 4th doctor with no answers

Well, that might be a little bit harsh but I still do not have any answers, or anything more than a loose plan, regarding my blood and bone marrow problems.

In short, my blood tests since roughly 2001 have shown a downward trend in all the key components that make up blood; haemoglobin, platelets and white cells. As well as the occasional abnormality just for the hell of it.

The reasons for this are still VERY MUCH unknown; there is no research that associates my bone marrow problems with Pachydermoperiostosis. So I am either ridiculously unlucky and have two very rare condition or I am pretty much unique in the severity of my Pachydermoperiostosis as there is no medical evidence of this problem.

The plan now is very simple, stop taking the drugs I have been prescribed to help my condition and hope this improves my health. A strange one as the drugs were meant to help me, not make worse. But alas, for a complete picture of what is wrong I need a drug free system, so coming off them will mean we can definitively rule out the drugs as the cause.

I can’t say the doctor filled me optimism that this will help as he continually referred to the next step, a referral to a specialist in empty bone marrow at King’s College Hospital, as when not if.

There have been some positives though; I now have doctors that talk to each other, my medical records are in reasonable order now, like having just the one set at each of the hospitals and the geneticists have had a rocket put up their backsides, albeit it doesn’t seem to have made much impact.

So it is time to wait again, another two months, before a blood test and in all likelihood a referral to new doctor.

 

New Year, New Problem

Unsurprisingly, most of my medical experiences don’t really run to plan and during routine checks ahead of my knee surgery there were some complications, of course there were.

The blood results during my pre-op tests showed that my levels of Haemoglobin, platelets and white blood cells were all low, from what I can remember from GCSE Biology, that means I am pretty much being low in the blood part of blood.

As normal I have been subjected to ALL OF THE TESTS. This time I have had seven blood tests in 3 weeks, an ultrasound of my abdomen, followed by an echocardiogram and an ECG before they gave me a sneaky bone marrow biopsy while I was under general anaesthetic having my knee rebuilt.

The bone marrow biopsy gave some pretty special results. They were able to take a core, which showed nothing. Well I hope it wasn’t technically nothing as having hollow bones would be a bit too mental, even for me. The biopsy showed no cells in my bone marrow, which would explain the low levels in my blood. I can’t be alive and have no blood cells in my bone marrow, so there must be some, somewhere, but we need to find out if the level is falling or how we can fix it, because it’s not exactly the best way to have a long and healthy life.

The possible fixes are a bit scary really, obviously top of the list is a trusty concoction of yet more drugs or a blood transfusion or the most extreme, yet most comprehensive fix would be a bone marrow transplant

The only way it is noticeably affecting my life, well it is presumed as being caused by this, has been weight loss. Not drastically obviously weight loss but over a couple of months I have dropped a jacket and a waist size.

So what is happening now? Well, we have results and no answers. I see my haematologist again on in two months, during which time he will hopefully have been able to access all my blood results from way back when. For my part, I have had to get all my hospital numbers together for him, all 6 of them!

 

 

My whole gene is going to be sequenced – well, maybe

I know this is really late, but at the end of October I finally had my appointment with the geneticist that will actually investigate the juicy details of my condition. It went well and they will be looking at my genes, first concentrating on the genes known to be mutated in people with similar less severe types of my condition and found in research conducted abroad.

This process is likely to take around six months to a year, but not because of a lack of technology, the lack of funds for the tests is the problem. In this case it is not paying for the actual tests but the NHS can’t pay for enough man hours for all the tests to be carried out, so I have joined a queue.

It is not definite that I will have the same mutated genes as other people have, due to rare nature of my specific condition, so it is quite likely that I will have my whole genome sequenced, all 20,000 genes. Now that is cool, they would be able to tell everything about me, but again this would take a while to happen. The test costs around £1,000 and can be done in a day but again it is finding a place for me in the schedule.

The main reason for having this done is to find out if any mutated genes I have are dominant or recessive. If dominant, the children will be next, to quote the Manics, but if recessive the chances of me passing it on to any children I might choose to have, would be minuscule. So it is pretty important and exciting that answers will be on the way. Well ‘on the way’ is a bit of an exaggeration, the appointment finished on, “if you haven’t heard from me within six months drop me an email to remind me”. Same shit, different day.  

 

I can see answers, well maybe

After years of anguish and pure incompetence there is finally some answers in sight, well maybe.

I have had quite the few months. After the ridiculous situation in June, I have now finished my investigations with my rheumatologist and we a staying as we were, no changes to drugs and I now will have an annual check up to make sure I am not about to fall apart.

I had a couple of scans, and they show that although my long bones are still actively growing, it is not at a rate that suggests anything scary. There was an option to change my medication from daily tablets to an intravenous dose every two years. It would have been nice not to have to take tablets every day but the Doctors decided against it, which I thought was good news. Yes it would be easier but having a drug used in chemo is never a good idea if you can survive without it. I am fairly happy with the as you were stance, to be honest.

Remember when they screwed up, well it turned out I had three separate files at Chelsea and Westminster Hospital, all with different letters and tests in, basically according to their system, they had 3 of me, all with different bits of my condition in different files. A* for organisational skills.

This brings me on to the Dermatology department at C&W, who continue to practice with the same level of ineptitude I have become accustom to. It took over 8 month for them to arrange an appointment with a geneticist, promised in December 2011, and is now scheduled for the end of October.

I had a clinic appointment with the entire department. I spent the majority of this wanting to clip each of them around the ear, well mainly one specific consultant. This “character” wanted to show off. “Oh yes, I remember that presentation at the BMC. It was excellent. Do we have the photos? It must have taken 40 years of him” My first reaction was to take the insult on the chin. He went on to describe my case as fascinating, which really pissed me off.

I now could only focus on this bell-end and his fascination in my case. I was delighted his fascination had lead to him discussing me with his colleague in the department, say over the 10 years since the presentation. Oh no wait, that probably would have lead to the realisation that I was being seen.

Well, Dr Twatimus Maximus, if you were not a doctor and worked in the private sector, I doubt anybody would have been nodding along as you brought up a client you were fascinated by, saw an excellent presentation on by a colleague in your department and the failed to mention for the next decade. If a colleague presented a client to the industry, and then I didn’t hear anything about it for the next decade, I would have asked a question or two, say 9 years ago. I definitely wouldn’t be trying to show during another presentation on the client by a different colleague. PRICK.

I haven’t had an appointment since this because of stringent time keeping and the *excellent* service provided by South Eastern Trains. My appointment was scheduled for 11.45am, I had taken the day of work, so set off for an hour’s journey with 20 minutes to spare. My train then sat at a standstill for 50 minutes, because some berk had decided to use the train tracks as a shortcut.

As I was running late, I rung ahead to tell them so.

A clinic, scratch that, a department that has never run to time could surely accommodate me. I was only running half an hour late. “No, sorry, there will be no point you coming across to the hospital I’m afraid” was the answer. I was less than impressed, but calmly made an appointment later in the month, as soon as possible, which turns out to be be on the same day I see the geneticist. That is going to be a day packed full of fun, there is nothing I like more than waiting rooms.

What a Shit Week

Well this week has been testing to say the least. The administrative staff at Chelsea and Westminster Hospital have surpassed any previously high level of incompetence to reach the summit of Mount Totally Fucking Shit.

Last Saturday I received a new appointment letter for late July with a new doctor in the Dermatology department. Now this was confusing, I already had an appointment booked for Wednesday.

Due to this confusion I rang Dermatology for clarification on why I had two appointments with two different doctors, one of whom I had never met. I was quickly told it would be because my appointment on Wednesday was cancelled, but Jackie did not know why nor why I had an appointment with a doctor I had never met……….. Oh Joy. I was informed that Jackie would be looking into this and would be in contact the next day, which in the Gregorian calendar was a Tuesday.

By complete coincidence I had an appointment with the Chelsea and Westminster Rheumatology department, albeit off campus in Westminster. I arrived at my appointment promptly and sat waiting, 45 minutes passed before the receptionist came to me. She asked if me if I knew who had referred me, as my GP had no record and she did not have a referral letter. I told her that it would have come from a Dr in the Dermatology department and gave her a very abridged version of my tale as a explanation.

The receptionist spent the next 15 minutes trying to find out from the Dermatology department what was going on and where my letter was. So that was that I could not have my appointment.

I was seething and told the receptionist not to worry I would go there myself to sort it out.

I spent the 15 minutes walk to Victoria fighting back tears as I spoke to Dad on the phone to try and compose myself, by the time my tube came I was calm, collected and ready to assassinate any member of the dermatology administrative team who blocked me.

I got to the hospital tout suite, well that isn’t entirely true I popped to Starbucks (other coffee shops are available, probably with better coffee), I had a feeling I could be waiting around and knew beverages were going to be required.

I got to the department, still waiting for a member of the admin team to call me back following my conversation on Monday, and asked to collect a referral letter and speak to the head of the admin team for Dermatology. The gormless dingbat, who I have had the arduous task of dealing with far too much for my liking, took a few minutes but seem to have understood the sentences he had heard and promptly picked up the phone. Nope, scratch that he didn’t understand at all. I had to explain my problem to another member of staff who could manage a conversation and interact with more that one human at a time.

I took a seat to wait to see who I would be presented with to discuss my case and the failings of the dermatology department. I was greeted by Steve the head of admin for the Rheumatology department, hang on I hear you say but that is not who you asked to see, I KNOW. Apparently Jackie the head of admin for Dermatology was unavailable, and she wasn’t unavailable because she was returning my call either. I’m still waiting for that one.

For his worth, Steve was very understand and in truth shocked at the treatment I have received within the Dermatology department, but as I said to him at the start of the conversation, it really wasn’t his fault or area, my first dealings with his department was this morning. But he pressed the phone monkey on reception to find out by who and why my Wednesday appointment was cancelled and moved, which he did actually manage to do in little over 10 minutes, a miraculous event that still astounds me.

Steve has also followed this up yesterday, chasing the relevant people to get me a new Rheumatology appointment and answers from the Dermatology team, and has promised to report daily to me until there is at least an immediate resolution, and so far he has. So pat on the back Steve you are a good lad, Jackie you can burn in a pot of boiling piss.

A swift kick up the arse seems to work

*Appointment Alert, Appointment Alert*

After my previous appointment I was asked to be seen within the next six weeks (see I’m a Mutant), well six weeks later I thought I’d ring the hospital to see if they just weren’t going to tell me, or actually hadn’t booked an appointment. The answer was the later, oh the joy of NHS admin strikes again.

“I’m terribly sorry Sir, but Dr Singh didn’t have any space in her clinic six week after your appointment.”

“Did you think to put me in the next available clinic slot?”

“I can do that for you now Mr Bayliss”

“Ok, how long will this be?”

“6 WEEKS”

“Oh delightful, is six weeks just the go to amount of time for everything?”

“I don’t understand your point Mr Bayliss”

So I arrived at my appointment all hopeful of progress, at my last appointment I was told I would be referred to a geneticist specialising in dermatology to find out why I’m a mutant. I should have be having blood tests, to work out whether it was an exposure to a toxin like the turtles, a bite from a spider, or the fact I am actually called Kal-El and came here from Krypton, that has made me super special.

Alas it appears my doctor couldn’t be bother to do anything between appointments, even thought she had twice as long as she expected. SUPER. Sorry, to say she had done absolutely nothing is a bit harsh; she had text someone and was waiting for a response during my appointment, so you text them before I came in, Great.

Well to say I was unimpressed is a bit of an understatement, so I persuaded her that it was probably better to get on with this as I happily let every medic from here to timbucfuckingtoo prod, grope and harass me. I allow all my medical notes to be the Imperial University Medical Library, I must have had about 5 hours in the photo department over the years, don’t get me wrong I was in the waiting room for most of it. I am all for letting the doctors learn from me, but how about they do studies and experiments, rather than make me come for a chat about how they have done fuck all since I last saw them.

I tackled the conversation as politely as I could, on the inside I wanted to go apocalyptic on her ass, but I was very, “I think we should progress this with a bit more gusto” rather than “Oi MoFo you best get actioning some shizzy before I break my foot off in yo’ ass”.

My message was understood and the ball started rolling, suddenly I was being referred to the rheumatology department, I was booked into a “meeting of the minds” dermatology clinic within the month and was trotting off for a full body bone scan.

Just think if I had addressed this 5 years ago I could have had a book written about me.