Give the Doctor Somewhere to Go

Why reading your own clinical results and asking the right questions turns a consultation into a collaboration.

An AI-generated infographic on the blog content. (Click to enlarge.)

An Unexpected Appointment

Once again, I found myself in hospital, more times than I would have liked in a single year. I have lost count. I had no reason why this appointment had been scheduled, and my anxiety was not assuaged when, just over a week before, I received a call telling me to attend the diabetes centre.

It was a poorly delivered message. The department I used to attend had been relocated to what was once the Diabetes and Endocrinology Department, but you can imagine how I felt until I received clarification.

In any case, it would have come as a great shock, because nothing in my blood test results indicated any cause for concern in that area.

A Confusing Journey

When I did set off from home, I realised the bus was running seven minutes late. Although I had given myself enough time to find this new location, my appointment notice had not been updated accordingly. So I returned to the old place, where the receptionist registered me before advising me to take a seat.

A few minutes later, the receptionist came to tell me I had to go to another department. She gave directions, but the signage left me navigating a labyrinthine route, unsure whether I needed to explore further down or check with someone else. I did eventually find the place, and it was kitted out like a temporary setup, with patients barely out of a daze from the trouble of getting there.

Checks and Confusion

A nurse called out my name to check my height, weight, and blood pressure. Having arrived later than expected, and given the discombobulation that ensued, I feared the readings might be high. I took deep, controlled breaths and folded up my sleeve; they fell within the normal range. Phew!

Half an hour after my arrival, another nurse came to check what I was there for; it seemed the relocation had also introduced inefficiencies. Apparently, I had been invited for the second jab of the HPV vaccine, which, when I took it, proved quite painful.

Being My Own Advocate

This is part of my personal medical advocacy. Literate people should spend some time reading and understanding their clinical results, because doctors sometimes do not have enough time to tease out the issues with you. 

I recognise, too, that not everyone can do this alone; those constrained by education or digital access may need a trusted interpreter, whether a family member, carer, or advocate. That is precisely why those of us who can engage should and could do a little more.

When I do raise something, it is rarely idle curiosity. My questions are usually a way of satisfying myself whether a course of action is genuinely necessary. If you notice something outside the normal range in your results, bringing it up immediately elicits a response, whether an assurance that there is nothing to worry about, or an investigation requiring further tests.

Working With, Not Around

This is where prompting matters. When my consultant noticed my name on the board and invited me for a chat, my question about the creatinine levels gave the conversation somewhere to go. Those levels had been off the scale in late July, indicative of either an infection or kidney problems; if it were the latter, a change of medication might enter the fray.

Had I not raised it, the consultant might reasonably have assumed there was nothing more to discuss. Advocacy of this kind is not working around the doctor; it is working with them.

Along with the vaccine, a urine test was ordered, and late last night the results returned well within the normal range. I did not need a doctor or a consultant to tell me that, and my concerns were immediately allayed.

Essentially, we underserve ourselves in the quest for the best clinical outcomes if we leave everything to doctors as omniscient experts on our bodies, when we should be doing a bit more to keep them apprised.

A Gemini Notebook AI Podcast on this blog

You Are the Boss

A Grateful Return

At the hospital today for my biannual check-up, where I have been under consultant supervision for just over a decade, one can be grateful for good health and wellbeing.

Arriving with 20 minutes to spare before my scheduled appointment, the nurse was already coming to reception for me to take measurements of my blood pressure, height, and weight.

The Numbers Game

I seem to have lost a few centimetres in height, gained more kilogrammes than is comfortable in weight, and my blood pressure was unusually high. I put the weight down to winter clothing, though I could lose some, and my blood pressure could be due to the anxiety I sometimes suffer about getting to the hospital on time. This is even though I practised calming down when I realised my bus was running seven minutes late.

I must have been quite self-involved about my weight when the nurse taking my readings could easily tip the scales at about 50% more than the figures I was posting. In fact, her uniform was likely reinforced at the seams with Kevlar threading, because any exertion on her part could have her literally spilling out of her dress.

Observations in the Waiting Room

The lesson, as I sat in the waiting room to be called in by the lead consultant for my assessment, was that each person had a gait—from plodding to brisk—proportional to their bodies of various sizes. This suggested the quest for health and healthy bodies is a daily struggle, whether you work in healthcare or not.

One lady could also do with a change of shoes; the heel on the left foot was so worn from the outside to the inside that the bend alone could introduce a bow-legged, rickety condition due to wrong footwear rather than childhood vitamin deficiency.

An Evolving Consultation

In the consultation room, where the consultant knows me by name, we had the company of a pregnant doctor as an understudy. We went over the usual things: physical, mental, social, and other matters I needed to have in consideration. It is always easy banter, and for the first time I heard it from senior medical personnel without having to assert it.

I reckon it is a kind of maturation that visits veterans in their field—having experience but not using it as omniscience. To a recommendation that I was yet to be convinced of, she said, "You are the boss." I hope that meant, "You make the final decisions about your medical pathways," rather than, "You fool, I'm giving you the best advice and you're being stupid and obstinate."

In the process, I extended the blood profile to check specific elements rather than the broad indicators. The session with the nurse phlebotomist was easy, without complications, then I collected my six-month prescription before returning home for some much-needed bed rest.

Let us, with a gladsome heart, be thankful for health.

A Google NotebookLM AI Podcast on this blog

Back for the biannuals

Tell me about this

It was a week ago that I made it out to Crumpsall for my biannual medical with sheaves of printed-out medical results to get a better understanding of and explanation of the medical terms of obfuscation and intrigue.

This time, I met the lead consultant who was quite amenable to my inquiries, explaining in great detail the somewhat confusing or misunderstood terms whilst allaying my fears about other issues.

Critically, it was the result of the MRI scan I had in early October, the reading suggests that nothing is wrong with my bones, but my back muscles do need strengthening with physiotherapy, whenever I can get access to that service.

It flows better with drinking water

As was drinking water from the time that I woke up, my veins easily presented for phlebotomy, though that might well be dependent on the nurse doing it. I doubt the nurse with height and hands that would leave him comparable to the Nephilim would have succeeded, no matter what he might have tried.

Now, the results of the blood tests are posted for viewing immediately after they are available, the portal also offers trends on a graphical scale for you to note gradual or sudden changes to the readings observed.

Once again, I am grateful to the medical team that handles my care, from the receptionist who is always amiable and pleased to see me, we exchange copious pleasantries to the nurses who measure the vitals and then the consultants who extend beyond expertise to respectful humanising of their patients. I guess it is another meeting in six months.

Hotstepping into a magnetic resonance experience

Walking with a cane

For 20 years in December, I have used a walking cane. This was to help with the pain that I felt in my lower back for about a decade and there were times I had my much lighter partner stand on my back just to ease the pain.

The pain was exacerbated by standing still in queues or sauntering, I needed to be moving well or sitting down not to experience the pain. At times I have spoken about the pain either in the chest on my ribcage or in my back to my GP, and they have tried to put me in the scheme of enduring it rather than treating it. The walking cane gave more than the support and comfort to reduce or avoid the pain, altogether.

Obviously, when I got my first walking cane, it was a long black rod with an ivory ball to hold onto, as from the beginning I had decided whilst the walking cane was not a fashion accessory if you were to use a walking cane, get a good and fashionable one. Eventually, after trying many kinds of canes I have settled for Derby canes that have a rounded hook that could be hung over the wrist or the arm, hands-free.

Let’s have a closer look

In a conversation with my consultant a few weeks ago, we talked about my use of the walking cane which in addition became even more pertinent when I had cancer in my right foot some 14 years ago that I could not walk using the leg for almost 6 months. She proposed we have a scan of my spine to determine why I was having the back pain and if anything could be determined from that review.

Today, I attended a radiology session for an MRI scan of my spine without contrast. The without contrast part suggested I would not have ink injected into my veins to provide contrast in observing other organs in my body. I read up on the notes and was sure no adverse effect was expected as I had no metallic enhancements or augmentations had been done to my body. At least nothing I have consented to except if one had been abducted by aliens.

Stillness and noisiness

Having filled out the consent forms, the nurse invited me to the waiting room before the radiographer called my name and ushered me towards the theatre. At first, I was assigned a locker to put in my valuables, watch, love bangle, wallet, and satchel bag. I only had to take off my jacket and leave my cane outside.

I sat on the MRI gurney and as I was about to lift my legs to lay on the bed, I was told it might take 30 minutes when I planned for 10 minutes tops, I had to remain still, and the device was a disturbingly noisy thing that you needed earplugs and headphones. I had heard much about the containment from others with claustrophobic tendencies, and I decided not to be regaled by any more of their sordid tales.

As I lay down and set myself for the experience, I decided to close my eyes as the headphones belted out Ini Kamoze’s Here Comes The Hotstepper, certainly not what you want to be hearing in a magnetic tube, but that was what was on offer rather than the calming strains of classical music that I suggested might be a better offer.

Slipped out of it and sleep

I drifted off as the three shrill sounds suggested my insides were being peered into without intrusion, the wonders of medical science for which a controversial Nobel Prize was awarded in 2003. [The Lancet: The Nobel prize for MRI: a wonderful discovery and a sad controversy]

There were times I opened an eye, but I never gave thought to the idea I was in an enclosed space. Then the gurney slid right out, and we were done with a commendation from the radiographer that I took the session really well.

I got fully dressed up, collected my things and returned home, an interesting experience and in a few weeks, I should get a review of what was seen.

The many stations of help

I cannot help you

This had me confused as to what the role of a peer mentor was, which I thought was one of experience brought to bear by example and narrative other than prescription or instruction concerning the issues of life.

Whilst many might have a particular goal or aim for seeking out a mentor, in general, it would seem the better outcome is in shadowing and understudying with ample opportunity for engagement, discussion, explanation, or insight as to why things were better viewed differently.

Without stating it, the feedback was he got on well as an individual with the vicissitudes of life, so why was I self-indulgent and not pulling my weight? I think I have heard and felt that ‘helpful’ criticism before. Much I felt there was something that could be offered, I was ready to walk away when the option of another meeting was offered.

I acquiesced, but the said meeting was postponed by him and we agreed to a rescheduling, just as I had the unction coming out of the shower that I saw no mileage in our interactions. I am of the inkling; that it is for the best.

I think we can help

It was not easy to get to this point. After so articulately sharing some very intimate elements of myself it might seem I was on the one hand relatively well-adjusted and on the other hand seeking professional trauma intervention.

Things I had never given voice to with coherence I never preplanned and the utterance I never predetermined; came out of my mouth to make the case I could not have imagined.

I could only conclude that flesh and blood had not revealed this nor inspired me, I had every help from the Spirit to break through the hurdles that were put before me.

I am in the queue, and there is a prospect of finding the form of words that would flesh out the story I believe needs to be told for the possible purpose of benefiting others.

I want to help you

For the third time in the same week upon a referral from my consultant, I was back on the 20-minute walk to this support organisation. This time on the issues pertaining to means and resources.

Once again, concerns, situations, and circumstances were shared for analysis and played before me with the plight of the Israelites in Egypt, under the cosh of slavery and the duress of producing better bricks but with not enough straw. Not enough of it to meet the range of things that you never thought about once before.

I am walking into a place of more than enough, that is in my heart and in my mouth. It is however necessary to understand for context where you are leaving for a new place, so the significance of the journey can be fully appreciated.

Let me have this other information, he said, and I will get this other stuff for you.

Help for you

It takes quite a change in perspective to get to where you realise you need help, then comes where you go to get that help, after which you have to work through how to ask for help. Your request is then assessed to determine if you are eligible for the help, and to what extent the help can be given depending on the availability of help and helpers.

There is only so much people can do because their abilities and resources are finite, limited, and scarce. The most incredible help in any situation can only come from above, for that is where you get the strength to go through the storms of life and find the imagination to dream the impossible and bring that into your present reality.

Reluctance, tentativeness, and willingness become experiences of the responses we get and we should not be discouraged if we encounter more of the former before we get to some of the latter.

Of that, I have many testimonies and for that, I am grateful that I will yet give even better testimonies of goodness, blessings, faithfulness, and joy.

Blog - He shall preserve my soul, even forevermore

A catchup on the check-up

As things seem to be

Five weeks later than schedule, I was back in hospital for my biannual check-up which follows the usual routine of reviewing the results from tests conducted on my last visit, how I am both medically and mentally, along with other issues that might come up.

In these straitened times that even I in all my denial of reality sometimes suggests does not affect me, there is a sense of dissatisfaction in the state of affairs, a sad feeling of betrayal of confidences and trust that gave the impression of prospect where there was none, then with quite limited resources to hand, one is constrained in agency and autonomy.

It goes without saying that all these has its effects to either a greater or lesser degree on one’s health. Yet we soldier on believing that the travails of the present are temporary and would pass into the annals of recount and raconteuring with a wistful acknowledgement of how trying times have blessed us with an appreciation of the better things that have followed.

Something quite unexpected

In the review of the last battery of tests, I was unaware of an indicative test that had been conducted as neither my general practitioner (GP) nor I were informed of the result. My understanding was the test was rarely done and only annually, if necessary. However, on the consultant’s screen, I could see a third is the depreciation of an indicator that signalled my ability to fight infection with no clear reason as to why that might have happened.

It is a matter of concern, but one will have to wait for the results of tests conducted on fluids taken earlier today to determine if that was a mistake, an aberration, or a trend. With the new computer records system, you are notified of the result as soon as it is known.

Those hardworking kidneys

Beyond that, I wanted some close attention paid to my kidney function tests as the antiretroviral formulary I am on has been administered for over 12 and a half years. One of the components in the combination therapy can cause kidney impairment and I wanted that aspect monitored. However, looking at the trends in my kidney function tests over the last 4 years suggested I did not have anything to worry about.

The discussion nevertheless allows the consultant to pay a bit more heed to the indicators apart from being acquainted with the fact that I quite knowledgeable about my condition, the therapies, and developments in HIV medicine with the view to obtaining the best outcomes for my health and wellbeing.

Drink lots of aqua

Having had 3 instances where drawing blood was an ordeal, my cousin had given me some advice some months ago, so, from the moment I woke up, I was drinking lots of water, something Brian noted as unusual for me. By the time I was at the hospital this morning, I had drunk over a litre of water.

When I went to see the phlebotomist, my veins were in the Christmas spirit as for how my blood filled the vials, we could intone, “Let it flow, let it flow, let it flow.”, and soon, 7 vials were filled without the need for another prick in my arm.

Everything is electronic now, things are called up on computer and there were no forms for new appointments or prescriptions, you just had to give your name and date of birth along with some other personal information to get things done. The days was slow and tiring, in general, I felt good. I will just wait for the results for comparison and the next meet-up is in 6 months, I guess.

The vials of good news

Far along after the bloods

Long before we were caught in the throes of this pandemic and at a time when there was more freedom than we had stuff to do with it, at least a fortnight before each of my biannual medical check-ups, I would visit the phlebotomist to have blood taken in anticipation of discussing the results when I meet up with my consultant.

However, I cannot remember when I last did that, and the last three consultations have been by telephone conference with the inconvenient situation of reviewing the results of 6 months before. When I had a call over 2 weeks ago, I asked the nurse if she could provide me with an update once the results were ready and she kindly acquiesced to the request, even noting it in the update she sent to my General Practitioner (GP) and I.

Knowing it soon after the bloods

I find it strange that I have never met my GP who probably knows just about enough about me from the letters she gets if she reads them, or she just files them for reference when needed. My consultant however allows for a full flowing conversation about everything health, life, and much else.

The mail arrived in my post-box at the weekend, my CD4 count was at the highest it had ever been, I do not think I had that number at diagnosis almost 19 years ago. The other matters in the blood looked good too, and the cholesterol levels were improving, though I need to give it more attention. In general, I was given a rather clean bill of health and the likelihood that my next appointment in October would be face-to-face with my consultant. The times, they change.

Work from home does not make you a dullard

How things have changed

In conversations with an ex-colleague, I was amused to learn of some exploitation of engagements being contemplated by certain clients employing freelance consultants.

During this pandemic, the employment market is a bit fraught, for some, they are well placed to take on interesting opportunities and certain circumstances have closed up availability that competition is keen. What this can do is weaken both the resolved and bargaining clout of the consultant as they have to weigh the options amongst the various choices.

One given change to the workplace dynamic is working from home or working remotely. People are only going into the office if there is no way that they can do their work from home. I, for one have never visited the premises of my office since I took on this role in May and it is unlikely I will for the term of my contract.

Home and away, the same

Whether working from home or in the office, the same expertise is still required to do the job. For subject matter experts, what they are hired for is knowledge, know-how, and experience, bringing much of their wealth of insight and ability to bear on situations in the environment where they are engaged.

What I have heard is some clients are considering paying a lower rate to consultants who are working remotely, maybe in the misguided view that unsupervised consultants who cannot be micromanaged with some jobs worthy manager watching over their shoulders to ensure they are mercenaries to the core mean a loss of productivity.

This forgets that consultants are by and large professional and dedicated to getting things done effectively and efficiently. My further argument is that consultants are paid for their expertise regardless of where they are working from. A consultant is not suddenly a genius at work and a dullard at home.

The skill is the deal

I have not heard that permanent staff will be subjected to this stupid idea, not that it can happen without a fight, a dirty one at that. In fact, if you do expect a consultant to come into the office during this pandemic, you should be paying danger-money. The organisation I work for had over 500 COVID-19 infections in the time from September to January with one death registered. I fall into a vulnerable group, so, I cannot attend the office at all.

One thing I know is that I have been able to do my job remotely as best I can within the strictures of the permissions and rights that have been awarded. I hope that alone makes me worthy of my remuneration and hopefully is a testament of a good workman that no one will countenance an idea so reprehensible and expectant of utter and complete repudiation.

Blessed is the day with all its troubles

The day started slowly

Going from my telephone consultation last Wednesday, it had been arranged that I visit the hospital today to see a phlebotomist and pick up my prescription. It was an afternoon appointment and I had decided I would take the day off.

Waking up a little later than usual, I went for my morning walk and returned home for another nap. At noon, I made what you could term breakfast and soon after called an Uber cab to take me to the hospital. Much as I had considered walking the 6 or so kilometres to the hospital, a headache was not giving me the pleasure of the feat.

Not here nor there

In what was a test of temperament and attitude also quite unusual for my consultant, when I checked in at the pharmacy, my prescription had not been submitted for preparation and it was even suggested I return on another day to collect it. Much as I was having none of it, the pharmacist took the initiative to put things in motion.

At the outpatient’s reception, I was directed to the waiting area for the blood room. We do have a good natter when I visit and she immediately chased up my prescription, altogether, I was assured I can pick it up after the bloods. At least, I was sure the prescription will be correct.

When I was invited to give blood, the phlebotomist could find no recent requests on the computer. There was a pending request from 2018, I think that was when the computer system could not be accessed, and the requirements were written down. No one went back to synchronise the record of activities.

Fixed through communication

The last fulfilled request was in October 2019, which left me wondering about what happened to the vampire conference donations of April 2020. As my consultant had the results for our conversation last week, I guess what is required is a bit more housekeeping to match the blood work requests with the fulfilment of the orders.

Returning to the receptionist, she phoned up the nurses and got the blood requirements straightened out, entered in the computer system and I returned to the waiting room, waiting to be called in again. This time the order was in for just 3 vials of blood, when I usually give 5 or 7 vials. I was not complaining, I could not even see a vein and it required a bit of jiggery-pokery with the needle to get the blood flowing out.

With humour and honour

Before that, I was asked to give a urine sample, on my way in I had only seen the female toilet and telling the nurse, she said, any of the toilets will do. Not that other patients in the waiting room would allow that to happen, as a chorus of voices pointed out the male toilets. The much older man quipped about my having a sex change and I cupped my breast, shock, mirth, and laughter arrived as contortions on the faces of the others. I guess we could all do with a bit of humour.

All done, I picked up my prescription, walked to the Manchester Super Store on Cheetham Hill to get some fresh fruit before boarding the tram back to Manchester Piccadilly and settling for some fresh air in the village garden. Looking at my watch, it was already 5:00 PM, the day had gone but not as eventful as Brian had his, tough and resilient, smiling through it all. I hope he has a good night’s rest. My poor dear, for his good heart, is on for a wonderful blessing. Love him to the stars and beyond.

The politics of arrogance in the office

My mercenary career

I have been doing office politics for longer than I care to be concerned, it is probably why I have preferred the role of being a consultant rather than an employee, there is a sense of independence it entails without having to pander to hierarchies of management and human resource departments.

Obviously, you still somehow report to someone within the organisation and it is the organisation’s decision to either retain or terminate your contract. I would be the first to concede that I am not your pliant mercenary, supine as to be invertebrate and given to masochistic tendencies.

Autonomy matters and where it is non-existent, I would well be on to something else than endure the situation. Gosh! I have standards and the traditional ones of respect, courtesy, and consideration rank highly in my book.

A nasty trait of arrogance

Quite recently, I have run against a cohort of intellectual arrogance that deadens the capacity for the comprehension of basic facts. They have decided in their fiefdom that they must retain absolute control that even the most reasonable argument leaves them unpersuadable. It is a sorry sight to watch.

When engagement for understanding, cooperation and facilitation simply elicits infantile truculence you are left with the wise saying of Peter Drucker, the once upon a time eminent management consultant, “discover where your intellectual arrogance is causing disabling ignorance and overcome it.”

Not the easiest thing to do, but it goes a long way to fostering professional and work relationships if you willing to listen, understand, appreciate and allow. There is always another perspective to the way you see or do things if you get off your high horse.

Grateful for the generosity of time, service, and hospitality

Never forget to be thankful

It crossed my mind that for the many acts of generosity I have recently experienced, I have not properly acknowledged and paid gratitude. A few weeks before, having acknowledged my hospital and shortly after my original consultant in Amsterdam and my current consultant in Manchester on Twitter, they both sent their greetings.

In our exchanges, I promised to visit my old consultant in Amsterdam after this Coronavirus pandemic was over to thank him for the decade after we first met. My consultant here then informed me that I would not be meeting her, this time, but the consultation would be done over the phone in early April, a few weeks ahead of the scheduled appointment.

I am grateful for their professional care, the confidence they all have exuded in attending to the critical and general issues to do with my health, I feel I have always been well cared for.

Calling me on the phone

When the call came in early April, we went over results of the consultation in October, checking what might have changed in health and life, both would be registered as considerably improved. Beyond that, they arranged for me to visit the hospital for a phlebotomy and at the same time pick up my prescription. Much consideration had been given to ensure we have a separate area from the common blood room for the blood tests.

On my visit, there were a few administrative issues which would have required going to the common blood room, but the nursing staff ensured that would not be the case, they worked to ensure the arrangement they had made with us was kept, without my insisting on it. They recognised they some might be anxious about being in crowded places in a hospital.

Gifts and swifts

The nurses were interested in my FFP2 respirator mask and asked where I got it from. I noticed I had a more sophisticated mask than what they were wearing. They had plain surgical masks that would offer no little protection from the Coronavirus. Whilst I was waiting to be attended to, I was the only one in the waiting room and I was offered a cup of tea.

Blog - Masking all attempts at convenience

A nurse on finding out how much I had paid for my respirator, was aghast, that we went away and brought me a couple of surgical masks that I could have as spares if needed. Quite helpful and generous they were in time, care, concern and service.

Picking up my 6-month prescription, the paperwork shows the order was put in on the second, filled in and packaged on the sixth even though I was not expected to pick it up until the fourteenth. The pharmacist had my bag of medicine in my hands within two minutes.

Despite the few difficulties during the day, in all, I have much to be grateful for, the NHS, the people who staff it, the consideration and care by everyone I met. I had to make a note of thanks and gratitude for it all.

Thought Picnic: How courtesy begets gratitude

Tough teachers in life

Having a sense of gratitude must always be one of the best expressions of our humanity. First, the humility to express it and acceptance from those to which it is directed can yield nothing but good. There are things I have taken for granted that were easily passé until adversity, infirmity, misfortune, disappointment, or regret gave me a wealth of experience I would have preferred to learn through easier means.

Yet, in life, they are all tough teachers, and the hope is whatever lesson is at the end of any experience is properly learnt and hopefully taught to others before they live through what you would rather not live through again.

Two amazing consultants

It must have been a kind of uncanny coincidence that earlier this evening, two consultants who have committed their expertise to my critical care tweeted within minutes of each other highlighting the work of their teams towards the Coronavirus pandemic.

The first, I met in September 2009 when I was diagnosed with a prognosis of 5 weeks if I was unable to respond positively to the regime of treatment that included gruelling chemotherapy that I took for 5 months. He was my consultant for a little over 3 years before I returned from The Netherlands to the UK.

The current, I met just about 3 years ago having been through a couple of consultants in London and then Manchester. When she introduced herself by letter, I did my research into her body of work and career in the UK and in South Africa, I was also able to glean such intimate detail about her personal life, all inadvertently online. Our first consultation left me probably more knowledgeable about her than she had readily studied from my notes.

Know your medical notes

In both cases, in fact, in all cases, I appreciate all the consultants that have been involved in the delivery of my care. I learnt that it was crucially important for me to know in detail everything about my condition, my treatments, areas of research, development and progress regarding my situation whilst being honest, forthright, and clear when talking about it with my consultants.

That did not come easily, my first consultant gave me that confidence because even as a professor of medicine, he took the time to explain the options for my treatment to me, printed out all the information I needed to know about the treatments, side effects and outcomes, listened to my concerns, actively taking them into consideration in the final decision process that I knew I had considerable influence in whatever direction my treatments would take.

The power of courtesy

My condition at the time of diagnosis was one of foolish negligence on my part, I was never judged nor condemned for it. It presented a rare opportunity for them to tackle a situation that medical science had satisfactorily caught up with and to students who were present at my consultations, it signified what a difference the knowledge and experience they eventually acquire to do in the future.

As a patient, I felt I had control because I was treated with respect, courtesy, and consideration. The freedom of expression and conversation between consultant and patient meant that we could easily discuss the medical issues as well as the broader life issues in a kind of holistic approach to patient well-being.

So, to my consultant in The Netherlands, I promised once the Coronavirus pandemic was over, I was going to visit him, which he acknowledged with a kind compliment. My current consultant, I will be seeing in a month for my biannual check-up. For myself, I have been blessed to have had these amazing people as my consultants and I will always be grateful for their professionalism, humanity, and kindness. Never be remiss in having a sense of gratitude.

It is always my body first

Remembering the times

Some 18 months ago, I attended a neurocognitive clinic out of concern for a long-term condition along with the possible long-term effects of the medication I was on. Now, I know from research that many barely tolerate this medication, whilst I have adjusted well to it over my 8 years of using it.

In the past two years too, the consultants have been incessantly persuading me to consider switching to newer lines of medication with lesser presumably lesser side effects and more efficacy. Beneath that concern for me was cost, for years ago, I had been switched to a generic and more affordable medication, which is prophylactic towards a recurring condition I have not been able to shake off.

Change your medicine

The HAND test suggested I had folic acid deficiency anaemia, the readings of which since then have fluctuated between satisfactory and concerning, it is best boosted through diet, but there might be a need for a booster shot at my doctor’s. That need has not yet arisen.

Eventually, I relented choosing from 4 drug options one that would not change my pill burden thus resulting in changing my lifestyle and other routines for a frequent traveller consultant. The only benefit that came with this medication was I could take it with meals.

Beginning in the second week of October, I was given a two-month prescription for review in two weeks. I opened a diary for a daily record of how I felt using the medication and in the 17 days to the first review, I probably had one happy day.

Days of avoidable horror

Unexplained aches in my joints and head, excessive flatulence, constipation and insomnia were the recurrent events. Two rather vivid dreams killed every prospect of catching any sleep for the nights that had those nightmares, it was beginning to affect my productivity at work. Then I stepped on my weighing scales to note that I was close to my heaviest weight in 6 years.

At the review, I told them that the 17 days was insufficient a timeframe to make the decision to send me off with a 6-month prescription on the new medication, I wanted us to conduct another review in 4 weeks.

The issue of my memory concerns was brought up a few times, much as I had noticed memory lapses, I had created compensatory efforts to mitigate those shortcomings. Besides, if the decision to change my medication was to be predicated on my presumed failing memory, then another HAND test should have been conducted to ascertain from the original if there was a deterioration in cognitive function. That had not been done, and so to my mind, the premise on memory was completely flawed.

Not working for me

I maintained my diary for 44 days and submitted a 44-page documentation of my toleration of the new medication, it was not working for me and I wanted to be put back on my original medication. Recidivism from this new line drugs is recorded in research at over 50%, they are not as tolerated for the self-same side-effects we are told are fewer and more manageable than we find with our original drugs.

When I next spoke with the specialist, she was offering another line of drugs and I was having none of it, not another 7 weeks of being a guinea pig of drug tolerance, with the time from my original medication increasing to a point where it might lose efficacy, or I might have built resistance to it. I remonstrated to a state of distress that I do not intend to be presented prospective drugs à la carte menu to find out what works for me, I already know what has worked for 8 years.

Done with playing guinea pig

That, I believe was enough to convince the specialist to put me back on my old medication until my next consultation in April.

Apart from the first night of use, my old medication has brought back some of my sparkle and banished all those rotten side-effects. For, whilst a doctor might know what is good for you, you alone can know what works for you. Sometimes, you must be as forceful as you can be to have that viewpoint noticed and acted upon for your own benefit.

At the back of your mind, this must be the resounding mantra, “It is my body first before it is your guinea pig.”

Like swallowing a poison pill

This is scary stuff

When I opened the packet of my new medication just over three weeks ago, reading through the medical notes was an experience in itself. Then, I had to tear off a “Patient Alert Card”, to which I wrote in my doctor’s details and was at all times to carry the card with me.

If I were to have a hypersensitive reaction, I was not to ingest any more of the medicine as I risked a life-threatening lowering of my blood pressure or even death. Before I took the medication for the first time, I already had the severe side-effect of a psychological upset.

Having done my research of the options, it is fair to say that the documented side-effects are a compendium of misery, it is no wonder that it is reported that the attrition rate of switching back to old formulary is close to 50%.

I needed another review

I kept a diary of the side-effects I suffered over a period of 16 days before our first review that was to completely switch me fully to the new medication for the next 6 months before another consultation. I did not think 16 days was long enough to make that decision, as adjusting to new medication would normally take longer and I would rather we had an assessment to ascertain the efficacy of the new regime than to discover a treatment failure 6 months hence.

The side-effects included insomnia, a tingling skin rash, a feeling of constipation, joint ache and flatulence amongst other minor complaints and two episodes of vivid dreams as nightmares that left me unable to sleep for the rest of the night.

At the review, I was asked why I made the switch as I was seeing another medical personnel who did not know that I had been nagged by the department to consider a switch for almost two years. My understanding was the switch was necessary because this new line of drugs had lesser side-effects and obviously they cost less.

What kind of a pill is this?

I was comfortable with the medication I have been on for over 8 years, the issues I had with my memory were well compensated for, I would not have considered a switch for the kinds of side-effects that I have recently suffered. Bloods were drawn and we agreed to meet in three weeks for a second review.

Meanwhile, I am taking my pills 2 hours earlier than before with no change to many of the side-effects, especially insomnia. I am also keeping my diary as a documented trail of how I feel, which is not helped by my realising that I am gaining weight – apparently, this is one of the other side-effects and no new medication is worthwhile if psychologically you are left bothered by a negative body image, the danger of sudden death and much else.

Have I decided on a poison pill?

On becoming anyone's guinea pig

Wards of discomfort

I have known hospitals from the very first day of my life that they do not seem that strange to me, but many a place have I been that it might not be as welcoming as to make one feel well.

In the last few weeks, I have 4 visits, check-ups, assessments, observations and talks, some could well be unsettling if not for a rather calm exterior. For it, all began with a suspicion, whether a growth, she could not tell, but it came with a referral.

Meanwhile, in another place we had a discussion for a change of medication, in my research, of the 4 options presented, none seemed like a safe transition as the listed side-effects were fearsomely avoidable if one just stuck to what one was already on for 8 years already.

Yet, they say, these are newer efficacious drugs, but the news out there suggests over 50% have returned to their original medication just because of the side effects.

A belly prod

At the referral, I could not say the consultant was pleasant. Much as I was invited to see another consultant who I had read up on, the one I saw had a bedside manner that served me lots of discomfort. The hand I offered was not taken and the introduction was mumbled or maybe I had suddenly become hard of hearing.

He referenced the notes, asked a few questions and then had me on the gurney but called in a chaperone nurse before he did anything. For God’s sake, I have been violated by medicine too many times to be concerned by a poke, prod or prick, but needs must for all the reasons in the world.

I felt no pain as his hands did the feeling all around my abdomen and elsewhere before I dressed up and he returned to the desk to scribble away. He was recommending a colonoscopy and a phlebotomy, whilst I was thinking, I would rather be with the people who know a lot more about me.

Pills of life

Then we decided, that was the best, it means my doctor who over almost three years has collected sheaves of medical material about me, but I have never met would be arranging for me to visit a department of probing analysts.

In all, I am now in new medication for which the side-effects have not been that serious, we would review the situation next week, at which point it might well be a full transition. My medication comes in a little box with a difference, I found I had to peel off a card that suggested certain side-effects could be life-threatening. Now, that is scary stuff. I have to travel with a card listing my doctor’s details.

I chose this because it offered no change in pill burden or mode of consumption, I could still take it at the same time as with my old pills and now, with or without meals. If I do suffer pyrexia; a medical type for having a fever, have a skin rash which might well be invisible considering, have shortness of breath, feel queasy, have a sore throat or a cough, I should consult my doctor immediately.

Just writing all that makes me feel unwell, but I thrive. Now, what is an umbilical hernia? That came from the prodding and poking. Whilst I protest that it is my body first before it is anyone’s guinea pig, sometimes, I find myself the latter, just because I am the former.

A reprieve and a celebration of goodwill

The signposts are appointments

The year in almost a decade now has been signposted by my visits to see my hospital consultants first in Amsterdam, then in Wrexham, London and now Manchester.

My visit today for which I took the day off started easy. My Uber ride to the hospital was without event, arriving with about 5 minutes to spare. I do worry about the rides because of the concern about getting to the hospital late has added more millimetres of mercury to my blood pressure readings as to put it in the danger zone.

Up and down and just about right

I booked in at reception and within minutes of my sitting down, a nurse I had not seen before called me in for the initial checks, weight, up a bit, height, down a bit, blood pressure, good, a bit can be improved upon.

After that, I met with a registrar who seemed to have swotted up on my notes before asking a few questions about how I felt. It seemed to me that my concerns about memory in terms of shortness and loss of it at certain times for which I had the HAND test last year had become something to do with my moods.

Moods are not memories

I had to immediately correct the impression, the medication I have been on for 8 years now, might cause cognitive impairment, that impairment is neither psychological nor psychiatric. Then the issue of folic acid deficiency anaemia, the counts are still low and this might need stronger medication than can be bought over the counter. My GP will be instructed to that effect.

The reason I was back for consultation within three months was to review my drug regime, a topic that had come up for the past two years. At my last appointment, I was given four choices to review. One that would have changed my drug regime from single-pill daily to twice a day, I ruled out, but I did have concerns about hepatic and cardiovascular side-effects, whatever is lactic acidosis and the dreaded lipodystrophy.

The registrar assured me that there would be stricter and frequency monitoring considering my medical history, however, we could postpone this activity for another three months.

Giving back wealth and experience

Through our discussions, as I had mentioned the many consultants I had met in that department over the last 3 years, we touched on the activities of the retired head of department who is out in Myanmar working for a foundation proving acute healthcare services in the region. He showed me his blog which makes interesting and revelatory reading, especially when comparing the advances in the West to the issues in less developed countries.

Blog – Greenshoots Foundation – Dr Ed Wilkins

This is after 27 years of being an NHS consultant, he has retired to work in environments that would tax people half his age and he seems to be having a time of his life. Very inspiring.

I had a new drug prescription made before I went for phlebotomy, where the queue was 40 deep until 10 were called off to be fed to vampires in another consulting room, the waiting time was close to 60 minutes. When I did have 6 vials drawn, I returned home and went to bed. Until September comes.

In maternal discomfiture

In maternal dispute

Just about 6 months ago, I went for a neurological diagnostic test just to ensure that my concerns about memory and reaction were not a systemic degeneration of my capabilities, though for what I had noticed about my concerns I had designed elaborate compensations for.

Blog - My HAND on my head - Memory Screening Tests

It so happened that all my considered reflexes and powers of recall were fine even if order and precision were not exact, my consultant did not think there was a problem. However, he did recommend I do a barrage of blood tests just to determine if there were other treatable conditions to assess.

The results of the blood tests suggested a Folic Acid Anaemia Deficiency (FAAD) for which I was to take Vitamin B12 and Folic Acid supplements.

Blog - Folate, I must, lactate, I can't

Keeping the flu at bay

To deal with the FAAD, I got Folic Acid 400 µg from the pharmacy and was not particularly comfortable with the label that suggested it was for pregnant women as it contributes to maternal tissue growth during pregnancy. As it transpires, everyone needs Folic Acid for cell growth and development, and this should be obtained sufficiently from diet except when pregnancy demands more than is supplied in the diet.

This morning I called my General Practitioner to schedule my influenza vaccine which I took for the first-time last year and has on the recommendation of my consultant to be taken annually. I was given an immediate appointment from an hour hence and I walked up two streets to see the nurse.

When I was called in, after the basic formalities of my identity and a few questions about reactions and allergies, she brought the vaccine out of the fridge, pricked the upper shoulder muscle of my left arm and injected me. I am usually surprised at how they call the prick of a needle a scratch because it is not. However, the needle is quite thin that it rarely bleeds after the injection.

In maternal balance

Then I asked about a possible Vitamin B12 injection booster that my consultant told me of at our last meeting in September, but the nurse needed to see recent blood tests to be sure of whether that was necessary. Going through me online file, she found a recent letter from my consultant which indicated my FAAD issue had gone and my readings had returned to normal.

To be honest, I was not keen on the Folic Acid supplements and I only took fortified cereals for breakfast for a few weeks. I am not a breakfast person, but I was glad to learn of the development, though surprised that I had not yet received a letter from my consultant about my latest blood tests from September.

A slight discomfort from the injection and I will be fine.

Folate, I must, lactate, I can't

A 'Don't Worry' Call

A couple of days ago, I saw a message on my phone. The doctor's surgery had called with a message from the hospital, I was to contact the surgery for a chat, but it was nothing serious for me to be concerned about.

There is a psychology to delivering news pertaining to health, and as long as it does not appear to be a life-threatening emergency requiring immediate action, they do well to allay your fears.

So, I called the surgery yesterday morning, where the conversation revolved around calling in to see the doctor for another few check-ups but for the fact that we could not find suitable scheduling since I spent the weekdays working in Scotland.

My lifelong gestation

The alternative was to have a quick chat to the doctor and see how things go from there. A few minutes later, the doctor picked up the phone and the conversation pertained to the results of the blood tests from the HAND analysis I did last month.

Then, the consultant ordered a battery of blood work to eliminate possible and manageable causes of my perceived short-term memory issues and attendant matters.

Apparently, I have Folic Acid Deficiency Anaemia, Folic Acid which is Vitamin B9 is also somewhat related to Vitamin B12. These two vitamins are essential to forming red blood cells, they help nerves function properly, Folic Acid is also essential in forming genetic material in every body cell, hence enabling perfect replication.

Knowing the reason why I forget to remember

Now, my knowledge of the use of Folic Acid supplements was for terms of pregnancy and though I have never seen my own period since before I ever knew what they were, I did wonder.

However, the deficiency explained the tiredness, insomnia, the occasional lethargy and the forgetfulness that I had highly compensated for through aide memoires, double-checking and reticence in proclaiming logical conclusions at work. That the cause could be dietary was also worrisome. I am working away from home and hence have no luxury of home cooking.

To make amends, I have to introduce cereals fortified with vitamins into my diet and I will consider supplements, yet I must be careful at over 50 not to run in excess of my daily allowance.

In three months we'll have some bloodwork done to ascertain if the deficiency has been remediated. I may not naturally lactate, but I must folate to keep well.

Hospital: That was brutal

What a start

Wednesday could only have been termed brutal in more ways than one, I returned home from the hospital and just went straight to bed to sleep off the feeling.

It was my biennial check-up, the one I was prepared to go for a month ago, only to realise that it was a month later. I got my appointment card and called an Uber cab to take me to the hospital and that is where my physiological problems began.

The Uber driver in the quest to cut out traffic ran into road blocks and other traffic that the 40-minute leeway I gave to getting to the hospital was being eaten up that I was getting anxious. The journey only takes 20 minutes, I arrived, just in time.

The pressure of the world

Then through the labyrinthic corridors to the Out-Patients’, I wended my way, half-hobbling and almost reduced to panting when at the reception I realised that I had forgotten to put my appointment card and treatment journal in my pocket. Though I did not need that to identify myself, I was at that point flustered when I was directed to sit in the waiting area.

Minutes later, I was called in for a weighing and blood pressure assessment. My weight has been going down, but the numbers that came up for my blood pressure were astronomical, both the systolic and diastolic measures in the 3 figures.

We tried the other arm, but I was already in a state, the numbers did not radically change. The nurse opined as did the doctor later on that certain patients have a white-coat syndrome that heightens their blood pressure in a hospital setting and that hospitals are rarely the best place to take blood pressure measurements.

A doctor I miss

I did not think I had a white-coat syndrome, I have known the inside of hospitals from the day I was born, there had to be other factors. My little sleep, the Uber ride, my forgetfulness and any other factor that is as yet undetermined. I did measure my blood pressure in the relaxed setting of my home yesterday and the numbers looked within the ranges of normal.

I was meeting the doctor for the first time, he introduced himself as a registrar, I have lost count of the different faces that make up this department. The head of this department when I first attended this hospital some two years ago, an affable and friendly man with a gentlemanly mien and comforting bedside manner had retired and was out in Burma doing charity work. I last saw him in October and he was the one who suggested I had a big do for my 50^th birthday.

Then I had had the opportunity to research the incoming head before I met her in the middle of the last year, we got on quite well. However, as the new doctor began to go through my notes, his apparently calming assurances left me in more discomfort and anxiety than I have ever felt meeting consultants in the last 8 years.

The whole works and working over

Maybe it was a confluence of events, but by the time I had seen a few more unpronounceable names to do with my liver, my kidneys, my gall bladder and my bile ducts, none of which on further research back home presented an alarming set of circumstances, I felt like I had gone in for acne and ended up in intensive care.

He was being thorough, at least that is what he told me and invariably, my drug regime might be modified in 6 months’ time based on cost, and I have a battery of tests to follow, bloods, liver scan, cognitive impairment and a ‘non-judgemental’ review of my sex life. Then he put my numbers through QRISK to determine my susceptibility to cardiovascular disease within the next 10 years and having stopped smoking 33 years ago, I was denoted an ex-smoker rather than a non-smoker; technically, he was right and thorough, if not pedantic. It was the full works and brutal.

I took copious notes and at the end, we did not even have a customary handshake before he was out to pick up the notes for the next victim, sorry, patient.

That was brutal

I put in my prescriptions at the pharmacy and joined the long queue at the phlebotomist’s, where a bit of gallows humour appeared to lighten up the day. When someone asked if they had lunch breaks, I quipped as to whether vampires ever took breaks from bloodsucking.

When I finally got home, I just went to bed, too much had happened in such a short day. Yes, it was brutal, by all standards. I am not looking forward to meeting this doctor again and it is probably nothing to do with him, I was just completely ill at ease chatting to him.