Archive for the 'Health, or lack thereof' Category

No shit, Sherlock!

Posted by on July 8th 2019 in A bit of a rant, Health, or lack thereof


As per my recent conversation with the GP surgery's receptionist...

Yes, I know that the results show that I have health issues. When I made the appointment for the test I told you that the results would be out-of-limits. I know the cause and I'm undergoing the treatment. A further test isn't going to make it any better.

No, I won't be arranging a telephone appointment to discuss the results - I already know what's wrong with me, it's been going on for over three and a half years and is documented in both my GP patient record and my Haematology patient record at LRI.



Another waste of NHS resources

Posted by on June 26th 2019 in A bit of a rant, Health, or lack thereof

It's that time of year again - time for my Annual Vascular Review at my GP's Leicestershire-based surgery.

At least once a week I attend the Hambleton Suite at Leicester Royal Infirmary where I have my observations and weight recorded, then I have blood samples taken from my Hickman Line for a full suite of tests, then the line is dressed, then I attend a session with the Senior Specialist Dietitian, then I attend a review with one of the Consultant Haematologists. What they don't know about my body and blood isn't worth knowing. All of the results are digitised and are available "online" to my GP within 24 hours.

You'd think that I'd not need to give yet more blood samples to the GP's phlebotomist in order for the Vascular Nurses to have something to work with, but it's not so. They have to take separate samples so that they can send them to their preferred test facility over the county line in Coventry, Warwickshire. That's because although the GP's system can access the Leicester Royal Infirmary's records, the Vascular Nurses' system can't - that can access only the Warwickshire records.

Because of this, I have to take up an unnecessary appointment slot to provide unnecessary blood samples for a suite of unnecessary tests. Furthermore, I have to have at least one unnecessary hole in the arm because the GP's phlebotomist is not allowed to take blood samples from my Hickman Line.

I really don't get why there's such a communications block, especially as my GP's room and the Vascular Nurses' room are only ten yards apart.

It's a farce.

By contrast, I also have to attend monthly sessions with the Community Heart Failure Specialist Nurse at Hinckley Health Centre - when she wanted to take bloods for tests I told her that weekly tests were ongoing at the Leicester Royal, and she was able to access their results online within seconds, thus saving time, money, test resources and arm-holes.

So go figure why the NHS is cash-strapped.

But when he got there, the cupboard was bare…

Posted by on May 28th 2019 in A bit of a rant, Health, or lack thereof

Chris kindly went over to LRI on Saturday to collect my 25mg Ciclosporin capsules. I mentioned it in clinic today and the consultant understood the issue and gave me a prescription for yet another denomination - 50mg - just in case the dose changes again. Also on that prescription was a request for a month's supply of Isavuconazole, an antifungal drug that I'll be on long-term and which I will run out of at 10pm tonight.

I went to the on-site pharmacy and after a long wait was presented with the 50mg Ciclosporin capsules. The Isavuconazole, however, wasn't in stock. They've had to put in an urgent order which means yet another trip to the hospital tomorrow to collect it.

So, that'll be three trips to LRI on three consecutive days (my next clinic appointment will be on Thursday).

Did nobody tell these people that I'm supposed to be at home getting some R&R?

Variable-dose cock-up

Posted by on May 24th 2019 in A bit of a rant, Health, or lack thereof

On the subject of Ciclosporin, it's the only drug in my TTO stash that's "variable-dose". In theory they measure what's in me every time I provide a blood sample in clinic, and if the levels aren't right they call me later to tell me to adjust the dose.

Curiously, the never-before-seen specialist registrar that assessed me and my results in Thursday's clinic didn't mention a dose-change despite having the test results right in front of her (yes, the results were available to her because the consultation was 4 hours and ten minutes late).

But a few minutes ago I took a call from one of the BMTU senior nurses... my ciclosporin level was low on Thursday... can I increase the dose from 100mg to 125mg from Saturday morning onwards?

Well, no, I can't. In its infinite wisdom, the hospital pharmacy provided only 100mg capsules when I was discharged, and those capsules can't be divided.

So it's looking like another trip to Leicester tomorrow to collect a prescription for smaller capsules... if they can find a bank-holiday weekend doc to write up the script.

And there I was, looking forward to a relaxing long weekend.



Posted by on May 19th 2019 in Health, or lack thereof

The stem-cells went in on May Day as planned and, apart from a few days of trots, recovery has been tiring but otherwise trouble-free so far. They let me out yesterday after a surprisingly short stay - they were expecting me to be in for another few weeks while battling infections but I do like to confound their expectations 🙂

I'll have to attend clinic at least once a week for many months while they monitor progress. If they pick up the slightest hint of an infection I'll be kept in again until it's sorted. I have to "stay safe" for at least six months after which I will have all of my childhood vaccinations again. No beer and no crowded enclosed spaces until I get the OK, they say 6-12 months 🙁 but I'm taking that to mean that a coke in the beer-garden would be OK - as you know, I do like to take advantage of poorly-defined rules. And they have thoughtfully provided a booklet riddled with poorly-defined rules.

As you'd expect, I'm on a cocktail of drugs. The worst is Ciclosporin, an anti-rejection immunosuppressive agent. While in the BMTU it was started as an IV drug and it had odd effects - various bodily parts (ears, palms of hands, soles of feet, balls) felt sunburn-hot while others (fingers, toes, nose) felt ice-cold. Thankfully that phase is over and now I'm on the oral version. The downsides of that are that the capsules smell and taste of stale urine, and I'll probably be on them for the rest of my life. The phrase "taking the piss" comes to mind.

Just in case you were wondering, the stem-cell donation looked like a bag of juice from a vacuum-packed beef joint. I had the feeling that Heston could have used it to conjure up an impressive but expensive jus gravy:


"Stock" photo

All dressed-down and nowhere to go

Posted by on April 30th 2019 in Health, or lack thereof

Time for a short update... my conditioning treatment has finished and I'm now confined to my room on the BMTU because I have no infection resistance whatsoever - not just no neutrophils, but no antibodies, no T Cells, no D Cells, no Triple-A Cells, no Splinter Cells... you get the idea.

Let's hope that my generous MUD Donor makes it through the harvesting process - I know it's unlikely that the process won't complete, but me and "the unlikely" have a bad habit of meeting head-on far too frequently.

Fingers also crossed for whoever gets the job of transporting the harvest from there to here ASAP - I'll be prepped and waiting sometime from mid- to late-afternoon, so I've been told.

It's going to be a testing and interesting May Day - I think a hearty Fried English will be ordered at first light.


Half Man Half Hickman

The Tomorrow People

Posted by on April 17th 2019 in Health, or lack thereof, Just for fun

Well, I attended Glenfield Hospital yesterday for the heart function check. I passed that OK... contrary to the specialist nurse's opening gambit of wanting to up my daily dose of Ramipril and start me on beta-blockers (and possibly statins) it turns out that my heart's in good enough nick to proceed to SCT so they're not going to mess about with the current drug regime.

Today I attended Glenfield Hospital again, at stupid-o'clock in the morning, for the bronchoscopy. I explained that I have had no symptoms of lung infection since the CT scan weeks ago, that my infection markers were still right down, and that I was feeling in fine fettle. Suffice to say that they did the bronchoscopy anyway and now my lungs hurt, my throat's in tatters and my eating ability is trashed. As predicted yet totally avoidable, IMHO. Results are pending but I think we know what the outcome will be.

While I was wandering the broncho unit recovering from the sedative and from the local anaesthetic I got a call from LRI... an appointment has been made for me to go for a "missed off the to-do list" breathing/lung function test tomorrow, and guess what... yet again it's at Glenfield Hospital and yet again it's at stupid-o'clock in the morning. Incredibly, they really do want me to go for a breathing/lung-function test less than 24 hours after having my lungs and airways aggravated by a camera on a bendy stick! I was so angry but I was unable to talk clearly - I had to hand the phone to Chris so that she could talk sense to them.

Back home and the phone rang again... it was LRI again... an appointment has been made for me to have a "missed off the to-do list" Bone Marrow Aspiration at LRI and guess what... that's tomorrow morning too! After the breathing/lung function test we're expected to jaunt from one hospital to another in the blink of an eye.

So... FOUR out-patient appointments within FORTY-EIGHT HOURS at TWO hospitals over THREE consecutive days... whoever "planned" that lot needs to be introduced to the simplicity of Gantt Charts.

In case you missed it in my previous post...

the whole process has been "planned to within an inch of my life".

Yeah. Right. If you count "planning" as "shoe-horning everything in before the Easter weekend".

My period of respite is swiftly becoming a period of spite.

Mayday! Mayday!

Posted by on April 13th 2019 in Health, or lack thereof, Just for fun

The game's afoot... a suitable, willing and generous MUD (Matched Unrelated Donor) has been found and a date has been set for my Stem Cell Transplant. I'm told that the HLA "match" between me and my MUD is 10/10. I've also been told that my MUD is male, 24 years old, living in the UK and that we have different blood groups (he's B Positive, I'm O Positive).

On Tuesday 9th April I attended the "work-up" appointment where I was checked over and when the conditioning and SCT processes were described in great detail. To quote the Red Team consultants, the whole process had been "planned to within an inch of my life".

Well, within seconds I'd found a gaping wound in the plan, which had me attending Hambleton Suite on April 22nd for a Hickman Line insertion swiftly followed by admission to the BMTU for the start of conditioning chemo. Odd looks were exchanged when I asked if Hambleton Suite would be open for business on Easter Monday. As I suspected, based on my experience of Bank Holiday closures in 2016, the Suite will be closed for the Easter Monday Bank Holiday.

The knee-jerk reaction was to have me attend Day Ward on Easter Monday to have a temporary cannula inserted for the first day of chemo. I vetoed that immediately - I'm not the easiest person to cannulate and I've seen the damage that can be done when chemotherapy drugs leak from a poorly-located cannula.

Suffice to say that their latest plan has both the Hickman Line insertion and the start of chemo scheduled for Tuesday April 23rd. Yes, that's St. George's Day - not a Bank Holiday here in England despite many a campaign. But at least the Hambleton calendar now has Easter pencilled in. I wonder how many other clinic appointments they have had to change due to the oversight of something that has been a calculable date for nigh-on two millennia.

Oh, and some of my "few days of respite at home before kick-off" have been claimed back by the NHS - I'm to attend Glenfield Hospital on Tuesday 16th April to have my heart function checked, and again on Wednesday 17th April to have my lungs checked (yes, I cut them some slack regarding the bronchoscopy - now they owe me). Sometime before Easter I should have a breathing test and another bone marrow aspiration but so far there's been no word as to when they will be. I reckon they'll be out of time before I'm out of breath.

Anyway, the rest of the plan seems OK to me. I will be on the "FluBu" conditioning regime... Fludarabine 23rd - 28th April (was 22nd - 27th April), Busulfan 23rd - 25th April, Clonazepam 21st - 28th April, Thymoglobuline 25th - 30th April, Stem Cell Transplant on 1st May.

It's a good job I don't fast during Lent - starting on Tuesday 9th April I'm supposed to be getting through two of these bottles every day for at least a month:


Forty Fortisips

Been there, got the tee-shirt

Posted by on April 1st 2019 in Health, or lack thereof

We've been there before... a few spiked temperatures, raised infection markers, and a CT scan that might indicate that there might be a fungal infection in my lungs.

And here we are again. Despite there being no coughing, no wheezing, no discharge and no audible indication via stethoscope, a couple of days ago they said that they want me to go for another bronchoscopy and they wanted to ply me with IV anti-fungals.

Back in 2016 the fungal infection never revealed itself despite being hunted via x-ray, CT scan and then bronchoscopy biopsies. Maybe we scared it away? Or maybe the anti-fungal pills worked? Or maybe, just maybe, my own body dealt with it as evolution intended. Whatever the reason, the procedure caused irritation of my trachea, larynx and pharynx, and ripped the lining of my nasal cavity. All of that led to increased nosebleeds and at least 2 weeks added to my tariff. Just for good measure, I didn't react particularly well to IV anti-fungals.

I told the weekend docs that I'm not going through all that shit ever again. As a sort of "backstop arrangement" I was put on Voriconazole anti-fungal pills. Another change was how they dealt with the temperature spikes - no more paracetamol, just monitor and let my body try to deal with it.

And now here we are, a couple of days later. Infection markers down, not spiked a temperature for two days.

Go figure.

Gender reassignment

Posted by on March 29th 2019 in Health, or lack thereof, Just for fun

On Saturday the ratio of incoming male:female patients was such that the staff had to do a bed-shuffle. One of the bays usually reserved for females was reassigned to males, and was populated accordingly.

But a few days of being teased for being stuck in such a bay can have strange effects on a man. Much to the amusement of the staff, here's what it had done to us by breakfast-time yesterday:


Simone, Andrea and Stephanie.


A bit of slutty lippy, just for good measure.