allaboutGeoff

This last weekend I was reminded of those few dark days before I was able to find out the facts and a prognosis for my pituitary adenoma.

I spent the weekend, as I do occasionally, with a group of 9 of my very closest friends none of whom I had seen since my diagnosis – so it seemed appropriate to speak with them about it. I wanted to start with the poem by Wendell Berry that had helped so much; it was given to me by The Emergency Poet with whom I consulted only a couple of days after hearing the news and before I found out that my condition was basically no more terminal than life itself. She had been offering her services on the edge of Bradford’s wonderful mirror pool during a festival of some sort, she took a ‘case history’ and asked f there was any mood or state for which I would like a poem to help. My answer, without disclosing why, was a poem about ‘acceptance’ and she gave me a copy of Wendell Berry’s ‘The Peace of Wild Things’:

Thankfully not this high!

Back to the GP today to review my blood pressure. If you read my last post, I chuntered about a ridiculously high reading from the nursing assistant (or whatever) at the practice. Since then I have read up on best practice for taking BP readings and have been monitoring my own at least twice daily.

First that high reading. Most of the sites I have read say that you should be seated comfortably, feet not crossed, arm supported and relaxed. NOT chatting away as the readings were taken with crossed legs and a self-supporting arm! I’m generally reluctant to criticise, but this was the same person who was not trained sufficiently to be able to take the blood samples from the back of my hand (because finding a suitable vein inside my elbow proved problematic). Draw your own conclusions.

Anyway the first thing the GP did was check my BP the old fashioned way with cuff and stethoscope – high but in the same range as I had been recording myself. I think he was helped by the data that I showed him on my twice-daily checks.

I ask about my bloods – had to ask – and discover (no real surprise) that cholesterols are a touch high but kidney and liver functions fine.

So I express my concern at being drug-dependent for the rest of my life and whether or not lifestyle changes (I need to lose weight and get more active) will make enough change quickly enough for the forthcoming operation. On the question of BP, the answer to the first part is ‘maybe’, but the second part is ‘no’. So the discussion goes – “So can I take the necessary drugs for long enough to get the operation over and then look in more detail at lifestyle measures?” Dr Y agrees, and I am pleased to hear that the prescribed drug – Ramipril – could control my BP in 2 to 3 weeks. So I agree to that route after checking on potential side-effects (dry cough is apparently the most likely) and I had to ask about others which led to his reference book coming out and a longer list of rarer but still possible side-effects one of which was rhinitis. Now the last thing I want when some surgeon is going to poke a drill, some scissors and a vacuum cleaner up my nose is something else wrong with my nasal apparatus so I shall watch out for that one!

On to the elevated cholesterol levels – I ask about the LDL/HDL/Triglycerides split to find nothing especially unusual about the split. “Given what you have said about lifetime drugs, I suppose there is no point in my usual conversation about statins is there?” “True”, say I and a helpful chat follows about the largely minimal effect of diet on cholestorel levels – “If your body wants to run a high cholesterol regime then the liver can make enough of it from whatever you eat, so diet doesn’t really matter unless it is extreme”

Our final chat is about whether he can help me get a ‘not before’ date for the operation. I would like to book a short jolliday but unless I can be sure I will not have to cancel because of being called in then I’m not going to commit the £££. Unfortunately not, so it’s back to the surgeon’s secretary to see if she can help.

So I leave with a script for Ramipril, a request to come back in 3 weeks and an explanation that if my BP is under control by then he will let the surgeon know and I may be listed then. The delight is to find that, because I am over 60, it is free – I always thought the limit was 65 🙂

Call in at GP’s reception on the way out. “Dr Young would like to see me again in 3 weeks, so please can I book an appointment?” Computer says no. “We can’t do that, we only have on the day appointments, a few for up to 2 weeks hence. You can book online but only 2 weeks beforehand” What is the point of this!? It’s easily solvable – Dr gives me a chit to ‘allow’ an appointment to be booked in line with his wishes. It’s as if the system were running the surgery for its own benefit rather than that of either the Dr or the patient. Feedback and suggestions will be on their way. Put appointment in my diary to book appointment!

Well, it’s moving forward. I’m still totally sanguine (bad pun!) about this and really just wish it were all over and life could return to normal.

Given my recent foray into elevated blood pressure territory, and a reading from the practice nurse at my GP that was substantially higher than any other I have ever had, I did some research (thanks to several people who offered insights) into those little factors that might lead to a false reading. I hope that Suntech Medical do not mind too much that I have copied their excellent article below. OK, it is an American source, but i suspect that physiologically they are much the same as us 🙂

Several of the factors below were in lay when the ‘high’ reading was taken!

We have now unearthed our iHealth monitor and i plan to take readings every day in a relatively controlled manner. Let’s see what the outcome is. For sure, my BP is higher than it ought to be so I’m not deluding myself and I want any action to be based on a sensible analysis and diagnosis.

So, here is Suntech’s article:

Have you ever visited the doctor’s office and discovered your blood pressure was higher than you expected? Most people do not realize their blood pressure is constantly changing minute by minute in response to mood, activity, body position, etc. In fact, simple changes can cause blood pressure to fluctuate between 5 and 40 mmHg. Here is a list of 10 factors that can temporarily cause significant deviations in your blood pressure measurements.

1. Blood Pressure Cuff is too Small^1,3,4 – It is extremely important to make sure the proper size blood pressure cuff is used on your upper arm when taking a measurement. In fact, most blood pressure measurement errors occur by not taking the time to determine if the patient’s arm circumference falls within the Range indicators on the cuff. Studies have shown that using too small of a blood pressure cuff can cause a patient’s systolic blood pressure measurement to increase 10 to 40 mmHg.
2. Blood Pressure Cuff Used Over Clothing^1,3,4 – When having your blood pressure measured, the cuff should always be placed directly on your arm. Studies have shown that clothing can impact a systolic blood pressure from 10 to 50 mmHg.
3. Not Resting 3-5 minutes^3,4– To obtain an accurate blood pressure measurement, it is important that you relax and rest quietly in a comfortable chair for 3 to 5 minutes before a reading is taken. Any activities such as exercise or eating can affect your systolic blood pressure measurement 10 to 20 mmHg.
4. Arm/Back/Feet Unsupported^1,3,4 – When having your blood pressure measured, you should always be seated in a comfortable chair, legs uncrossed, with your back and arm supported. If your back is not supported, your diastolic blood pressure measurement may be increased by 6 mmHg. Crossing your legs has shown to raise your systolic blood pressure by 2 to 8 mmHg. The positioning of your upper arm below your heart level will also result in higher measurements, whereas positioning your upper arm above your heart level will give you lower measurements. These differences can increase/decrease your systolic blood pressure 2mmHg for every inch above/below your heart level.
5. Emotional State^5,6– Stress or anxiety can cause large increases in blood pressure. If you are having your blood pressure taken while thinking about something that causes you to tense up or become stressed, your blood pressure levels could significantly increase.
6. Talking^1,2,3,4 – If you are talking to the nurse/doctor while having your blood pressure taken, studies have shown that your systolic blood pressure measurement may increase 10 to 15mmHg.
7. Smoking^1,5,6– Tobacco products (cigarettes, cigars, smokeless tobacco) all contain nicotine which will temporarily increase your blood pressure, so refrain from smoking at least 30 minutes before having a blood pressure measurement taken.
8. Alcohol/Caffeine^4,5,6 – Alcohol and caffeine (sodas, coffee, tea, etc) consumption causes blood pressure levels to spike so stay away from alcohol/caffeine at least 30 minutes before having a blood pressure measurement taken.
9. Temperature^4,5 – Blood pressure tends to increase when you are cold. Therefore, if you are at the doctor’s office and the room temperature is “chilly” to you, be aware that your blood pressure readings may be higher than expected.
10. Full bladder^1,3,4 – Your blood pressure is lower when your bladder is empty. As your bladder gradually fills, your blood pressure increases. Studies have shown that your systolic blood pressure measurements could increase 10 to 15mmHg when you have a full bladder.

From the list above, you can see that small changes in your body, environment, and activities all have a significant impact on your blood pressure measurements. Since there are several factors that influence blood pressure, it is important that medical professionals follow the AHA guidelines for taking blood pressure measurements to avoid misdiagnosis of hypertension and inappropriate prescription of anti-hypertension medications.

1. Handler, Joel. The Importance of Accurate Blood Pressure Measurement. The Permanente Journal (2009) 13:3: 51-54
2. Long, JM., J.J. Lynch, N.M Machiran, SA Thomas, KL Manilow. The effect of status on blood pressure during verbal communication. Behavior Science (2004) 5:2: 165-172.
3. O’Brien E, R. Asmar, L Beilin, Y Imai, J. Mallion, G. Mancia, T. Mengden, M. Myers, P. Padfield, P. Palatini, G. Parati, T. Pickering, J. Redon, J. Staessen, G. Stergiou, P. Verdecchia. European Society of Hypertension recommendations for conventional, ambulatory, and home blood pressure measurements. Jounral of Hypertension (2003) 21: 821-848.
4. Pickering, T.G., J.E. Hall, L.J. Appel, B.E. Falkner, J. Graves, M.N. Hill, D.W. Jones, T. Kurtz, S.G Sheps, E. J. Roccella. Recommendations for Blood Pressure Measurement in Humans and Experimental Animals: Part 1: Blood Pressure Measurement in Humans: A Statement for Professionals From the Subcommittee of Professional and Public Education of the American Heart Association Council on High Blood Pressure Research. Hypertension (2005) 45:142-161.
5. http://www.faqs.org/nutrition/Hea-Irr/Hypertension.html
6. http://www.infobloodpressure.com/factors-affecting-BP-readings.html

Well, after all this time I finally got to see my usual GP – referred because of the surgeon’s concerns about potentially high blood pressure. I’m asked to get my GP to monitor my BP and then, if necessary, treat it. The hospital had been reporting 140/90 (after several checks on different occasions) but the GP gets 165/90 and when I go to see the practice nurse for a 2nd check 3 days later it is recorded as 195/115. Well, that latter figure seems ridiculous – I have had elevated BP for a while but never that high and why would it be way over what anyone else had recorded?

The other reason for seeing her was to get some bloods done for kidney function. She couldn’t take them. I presented my hand, having found from experience that getting a vein in the inside of my elbow is at least difficult whereas it’s easy from the back of my hand, only to be told “Oh, I can’t take it from there”. WHAT! There follows an unhelpful conversation during which she wants me to go to Bradford Royal Infirmary for the blood to be taken and I want to go to Leeds. The prospect of me wanting to go to a place of my choosing seemed a complete wobbler. I live in Leeds, I spend more time in Leeds than Bradford, I know my ways around Leeds hospitals. Her – “We always send patients to BRI” Me – “I thought it was  a National Health Service”.

To cut a long story short, I eventually went to St Lukes in Bradford because I found out that I could walk in and get seen fairly quickly if I went late afternoon. But yet another administrative failure – I could not find any reference to phlebotomy or blood tests on their website! So I rang and two very helpful ladies told me where and when to go amongst the various options available . The practice nurse had told me to go to BRI, much better options were available.

I’ve also got an appointment for the sleep apnoea clinic, to collect a blood oxygen monitor.

Although I have still to get a date for my surgery, I was booked in for a series of pre-surgical assessments yesterday and spent an interesting 75 minutes at Leeds General Infirmary having my fitness for surgery assessed. One of the most impressive features was the efficiency – having been asked to reserve 2 to 3 hours, to find that it only took 75 minutes was a delight.

So what was involved:

Filling in yet more medical screening forms, with many questions that are already on my record. Isn’t it about time that basic data (e.g. my GP’s details) are collected once only?

Given a bunch of information leaflets about MRSA (after I had been swabbed to see if I was a carrier – nostrils, armpits, groin), infection control, and a host of other stuff that proved interesting reading.

Weight, height – unsurprisingly they had not changed very much since the last four times they had been measured over the last month.

ElectroCardioGram – it took longer to attach the half dozen sensors to various parts of my chest and ankle than it did to actually record the scan! Incidentally, on the way down the corridor to the ECG I noticed a new name on my yellow ECG request form (Dr Phillipson) – on checking it seems that this is only for ‘internal charging’ purposes, nonethless it might help to get it right!

Blood tests – of course. Although I do wish they would volunteer to me what they are testing for. On this occasion I forgot to ask and unless I get a copy of any letter to my GP about them (despite asking this I have not been consistently sent copies – again it seems as if there is no central record that they can mark to make sure this happens). The trainee nurse who sat me down was slightly surprised when i presented my right hand with a vein already prominent, “Oh, I have not been trained to take blood from hands”. Still she went next door and brought in the ‘supervisor’ who took 4 blood samples painlessly and speedily.

Detailed interview with nurse checking my answers to the screening questions. All straightforward apart from some slight concern about elevated blood pressure (so that will be checked over the next 2 weeks to see if anything needs doing in the short term) and possible sleep apnoea (I snore and my wife reports that occasionally I stop breathing but always recover on my own) which will be monitored by my GP with a blood oxygen monitor. The apnoea is not a direct threat to surgery, if I suffer (and all the evidence is that I do not) then I will be scheduled for a High Dependency Unit bed post-operatively. It seems that if I do suffer SA then I will need a separate referral by my GPto the SA team. Off to make an appointment, over the internet, with my GP; this will be the first time i have seen him since diagnosis 14 weeks ago!

 So a straightforward visit really, handled admirably by a series of nurses most of whom introduced themselves by name and were very empathic. I just wish that I could get a date for the operation, or at least a ‘not before’ date, so that I can organise a jolliday without risk of having to cancel.

Geoff’s MRI scan August 2015

This morning I went to see the neurosurgeon, Nick Phillips. He explained again much of what Rob Murray (Endocrine Consultant) had gone over and that there was a chance my visual field would recover somewhat once the pressure was taken off the optic nerve. Basically another reassuring visit, especially when he explained that is will be several weeks before surgery – I am 16th on the list and they do 1 or 2 a week. The fact that I was not promoted to the front of the queue is reassuring. Apparently these things grown at about 1mm per year, so it’s been there a while.

He says it looks like it will just suck out ‘like custard’ (his words!) although the little bit above the carotid is typically hard to reach so may get left.

Apparently an ENT specialist will start it all off – presumably making the entry through the sphenoid bone – before he takes over with his vacuum cleaner.

The plan is to go in on a Friday morning, operation Friday afternoon and all being well walk out the next Monday or Tuesday possibly feeling a bit congested. Then I cannot fly for 6 weeks! Better get a trip to Bergerac in while the going is good 🙂

All questions answered, I am sent off with a pack requesting pre-operative screening as had been foretold in the appointment letter. Only to find that “There is no room today, is it OK if we send you an appointment?” Well, once again where is the co-ordination? Firstly, the appointment could have been pre-booked as we already knew that surgery was going to happen. Secondly, what was to stop someone ringing down to check rather than having me traipse on a 10 minute walk only to be told to go away?

Anyway, I am still totally cool about this and can and will get on with some stuff to which I had committed before all this blew up. Oh, and book that jolliday as well.

Throughout this journey I have been disappointed by the quality of the administration at LTHT. A letter received today 5th September vividly illustrates the point.

The content of the letter is by and large immaterial, but this bit is the crux:

“We can discuss things in a little more detail at your appointment on 1 September”

the process however is illustrative:

Date dictated: 26 August

Date Typed: 1 September

Date received (sent 2nd Class!): 5th September

As I said, ‘could do better’.

As it happens I already knew all about the content of this letter, but I wonder how often letters get sent out too late to be of value to patients, how often do adults get sent letters addressed to “The parent or guardian of..”, how often do requests for appointments get sent to the ‘wrong person’ and not get acted upon, how often are patients told they are going to see one Dr only to find that they see another?  How often are patients left wondering whether anyone is looking at their whole pathology rather than the components thereof? How often to patients have to wait 90 minutes when they have turned up for a timed appointment?

The quality of care has for the most part, and certainly in all material respects, been outstanding. It would be nice to be able to say the same for the quality of the administration.

I have just left a meeting of the Leeds branch of the Pituitary Foundation – apparently a support group.

I want to preface my comments with a very clear statement that none of what I have to say below is intended as criticism of those who were there and those who give their time freely to organise and support the group. It clearly meets the needs of some people.

I almost wish I had not gone. I do not feel supported at all. I spent about an hour listening to stories of what went wrong, trouble getting the right drugs from the doctor, general practitioners who did not even know what an adenoma was etc amidst all this the very occasional reassuring comment along the lines of “I had mine done 20 years ago and I’m still here”. Well I knew that was going to be the case anyway.

Maybe it’s because I am better informed than many others, maybe it’s because I am relentlessly optimistic, maybe it’s because after treatment I do not expect to be on medication, maybe I had very different expectations regarding what the group was going to be about. Whatever the reason I felt totally out of place in this group of people with whom I might have expected to have some rapport.  It seemed much more like a little social gathering than any real opportunity to exchange information (which is what I hoped for) and perhaps that is something that some participants needed. I don’t have that need and whilst I will give it another go, and suspect I will turn up in the future when there is a speaker, I don’t feel the need for social support of this nature.

I would have simply liked to have had a chance to introduce myself to the group, I would have liked the chance to explain what I needed from the group, I would have liked the chance just to tell my story so far.

Right then, back home to watch the rugby and find a support group to help me get over my experience at the support group!